Pyroluria Questionnaire from The Antianxiety Food Solution

This questionnaire will help you identify whether you might have pyroluria, a social anxiety condition. The physical and emotional symptoms below are caused by deficiencies of vitamin B6 and zinc. When you experience high levels of stress, vitamin B6 and zinc will be further depleted, so you may notice worsening symptoms and more anxiety.

Based on my review of questionnaires and results of pyroluria tests for hundreds of clients, I’ve grouped the most common or classic signs and symptoms first. I’ve also labeled the symptoms that could be directly related to low levels of vitamin B6 or zinc so you can individualize your supplements and dosages. Symptoms without these designations are due to a deficiency of both vitamin B6 and zinc. Check off any of the following signs or symptoms that apply to you:

Most Common Signs and Symptoms

1. Being anxious, shy, or fearful or experiencing inner tension since childhood, but hiding these feelings from others2. Having bouts of depression or nervous exhaustion3. Poor dream recall, stressful or bizarre dreams, or nightmares (low vitamin B6)4. Excessive reactions to tranquilizers, barbiturates, alcohol, or other drugs, in which a little produces a powerful response (low vitamin B6)5. Preferring not to eat breakfast, experiencing light nausea in the morning, or being prone to motion sickness (low vitamin B6)6. White spots or flecks on the fingernails or opaquely white or paper-thin nails (low zinc)7. Liquid zinc sulfate having a mild taste or tasting like water (low zinc)8. Poor appetite or having a poor sense of smell or taste (low zinc)9. Joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (low zinc)10. Pale or fair skin or being the palest in the family, or sunburning easily, now or when younger11. Disliking protein or having ever been a vegetarian or vegan12. Being sensitive to bright sunlight or noise13. Upper abdominal pain on your left side under the ribs or, as a child, having a stitch in your side as you ran14. Frequent fatigue15. Being prone to iron anemia or low ferritin levels16. Tending to have cold hands or feet17. Having frequent colds or infections, or unexplained chills or fever18. Reaching puberty later than normal or having irregular menstruation or PMS19. Having allergies, adrenal issues, or problems with sugar metabolism20. Having gluten sensitivity21. Neurotransmitter imbalances, especially low serotonin22. For women, belonging to an all-girl family or having look-alike sisters23. For men, having a mother from an all-girl family or a mother with look-alike sisters, or all the females in the mother’s family bearing a strong resemblance to each other24. Avoiding stress because it upsets your emotional balance25. Tending to become dependent on one person whom you build your life around26. Preferring the company of one or two close friends rather than a gathering of friends; becoming more of a loner as you age27. Feeling uncomfortable with strangers28. Being bothered by being seated in the middle of the room in a restaurant29. Being easily upset by criticism

Less Common Signs and Symptoms

30. Stretch marks or poor wound healing (low zinc)31. Crowded upper front teeth, many cavities, or inflamed gums or wearing braces (low zinc)32. Bad breath and body odor (or a sweet, fruity odor), especially when ill or stressed (low zinc)33. Being prone to acne, eczema, herpes, or psoriasis34. Reduced amount of hair on your head, eyebrows, or eyelashes, or prematurely gray hair35. Difficultly recalling past events and people in your life36. Focusing internally, on yourself, rather than on the external world37. Tending to have morning constipation38. Tingling sensations or muscle spasms in your legs or arms39. Feeling stressed by changes in your routine, such as traveling or being in new situations40. Your face looking swollen when you’re under a lot of stress41. Cluster headaches or blinding headaches42. One or more of the following: a psychiatric disorder, schizophrenia, high or low histamine, alcoholism, learning and behavioral disorders, autism, or Down syndrome

If you check off 15 or more items, especially the more common ones, it’s highly probable that you have pyroluria and will benefit from taking zinc and vitamin B6 supplements. I encourage you to be tested, but if this isn’t possible, or even if you don’t have pyroluria, supplementing with zinc and vitamin B6 may be worthwhile if you have a large number of these symptoms.

This questionnaire is based on my experience working with many clients with pyroluria, along with information from Depression-Free Naturally (2001), by Joan Mathews-Larson, Nutrition and Mental Illness (1987), by Carl Pfeiffer, and Natural Healing for Schizophrenia and Other Common Mental Disorders (2001), by Eva Edelman.

I start my clients with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg), plus a good multi-vitamin (with manganese and no copper) and a multi-mineral and sometimes additional magnesium.

For the zinc I have found Opti-zinc (Solaray is a good brand that doesn’t have copper) to be very well absorbed by most of my clients. Using the liquid zinc sulfate/zinc status test is a useful way to assess your zinc levels (see link below).

We increase zinc based on the zinc test and the vitamin B6 based on dream recall. And obviously social anxiety symptoms too.

This questionnaire and information is taken from chapter 7 of The Antianxiety Food Solution:How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood and End Cravings, available in major books stores and via Amazon. You can read more about the book here. You can find more detailed information in chapter 7.

11/5/2013 update – since doing this post, I’ve done a number of other posts related to zinc, vitamin B6, pyroluria and even introversion and I am including links to some of them here:

The comments on the posts about anxious introverts and the possible connection to pyroluria and/or low zinc and low vitamin B6 have been enlightening to say the least! Additional comments and feedback is always appreciated.

Hello Trudy. It appears we have somethings in common including our name. I am not sure if this is how or where I jump in as I am not used to blogging. I am 64 years old and have been dealing with impaired taste and smell for two years after a flu. I have looked online and have recently purchased Liquid Zinc Assay Max B from Premier Research Labs. I have recently found your site and think it is wonderful.
I suffered depression in 2008 after my husband received a liver transplant because of Hep C from tainted blood. I stopped taking Effexor XR about two years after but had to start again. I now have trouble with sleeping and use trazadone and sometimes Zopiclone. I also do not have an appetite and the loss of taste and smell has not helped!
After reading about Pyroluria I can identify with a number of the symptoms. I have avoided a social life over the last year and chalked it up to gaining weight (eating chips at night/salt) but realizing it is more than that. This is totally out of character for me as I have always been socially comfortable until the last few years. So finding this site has helped me a lot to recognize some things. I will add EPO to the zinc and B compound. I did the zinc test and was a 1.
I have a few questions. You recommend 30mg zinc initially and going up to 60 if necessary, 100 mg b6 and 1300mg EPO. My zinc quantity is 8 oz (237 ml) and the Max B-ND is a probiotic-fermented B complex which has 3 mg B6, 150% daily value. Could you tell how much of each to take to equal 30 gms and 100 gms and 1300 gms? Also I take a multivitamin that contains 2 mgs copper.
Thank you for your attention and your site is now in my favourites.
Trudy H

Hi Trudy (nice name)
I’m afraid I can’t give specific advice via the blog and it’s going to be best for you to look at your supplements and figure it out. I do prefer a multi with no copper for my clients with pyroluria – you can find one here, plus the zinc and B6 products I use with clients https://www.everywomanover29.com/blog/amino-acids-pyroluria-supplements/

Hi Trudy, I have been taking liquid zinc sulfate and feel so much better on it than the amino acid chelate tablet form. I sleep better and with the liquid zinc and 100mg of B6 and feel I can handle life better without the inner tension. A question I have is how do you deal with copper leaving the body if it is an issue for someone due to zinc copper problem particulary with A blood groups as they tend to accumulate copper easier than other blood groups I have read about this issue.
Thankyou so much for doing this work as it is so vital to so many people’s including my own’s wellbeing.
Katie

Hi Katie, I’m in Western Australia too! Can you remember how much the liquid zinc cost you? There’s no price on the website and it says their online store is coming soon. I bought a Bioceuticals brand today from Health Kick at Joondalup for $20.95. 50ml and you take 5 drops once daily. Interested to compare price. They also have a P5P B6 but it comes with magnesium. When I’ve taken magnesium in the past I’ve found that my heart area feels fluttery so I hope that doesn’t happen this time 🙁 Where did you find your B6? Thank you so much!

Trudy, I love your work. Thank you for bringing this info to people’s attention. I just wanted to mention a product called Zinc Drink by Metagentics. It has 15mg of zinc sulfate per teaspoon and costs $28.95 for 28 servings.

Katie
There are many forms of zinc and some do better with one vs another. It’s not often that I find zinc sulfate in the liquid form is the best tolerated but it does happen. Good for you for finding what works for you. As your zinc levels increase the copper will go down. You could support your lover and do saunas to assist with any detox

Dear Trudy, i read the above response with interest because i believe i need zinc but when i try supplementing i get anxiety (worse than normal) it lasts about a day or so.
I have most of the symptoms on the list!
I am having an infrared sauna at home soon hoping this helps detox and the copper which seems to be my problem. Any suggestions for me to safely get extra zinc please?
Thanks you

Joanne
If we suspect high copper I have my clients go really low and slow on the zinc. Sometimes another form of zinc helps and making sure there is no copper in any supps is key. You don’t ever want to feel worse. Sauna is great!

You can also get copper levels tested – blood and hair.

May I ask how much and what form of zinc? and if you’re using or have used benzodiazepines?

Hi Trudy,
Thanks for your response. I think i was using Solgar zinc no idea what type sorry. I also had tried some zinc gluconate 15mg combined with selenium which also gave me anxiety (i take other selenuim fine) I have bought (unused!) Optimal zinc lozenges which are 15mg zinc bisglycinate chelate. What do you think about these?

I have used in the past diazepam, 2-5mg very sparingly and only when desperate. Havent used for couple of years at all because I hate the thought of them and have discovered adaptogens 🙂

Hi Trudy,
I am so excited to find your site. I am a mental health professional at a big health insurance medical facility in Northern California and I have been discouraged by the over providing of SSRIS and medication without really assessing them or finding alternative ways to help people. I am anxious to get more education so I can help my patients learn that their problems ( anxiety, depression, constant tears, irritability,insecurity, etc.) may and can go away naturally. Mine did without medication. I wholeheartedly praise what you are doing and am grateful for your work. I have been referring them to your website and book and for those of my patients absolutely wanting to get off the meds and not go on them,I refer to “Mind of your own” . I am grateful for you pioneer women caring with love for the health of our women who suffer! you are my heros and I will follow in your footsteps. Thank you!

What amazing information.I have a lot of the above mentioned symptoms. Earlier this year I suffered an emotional explosion, a severe eczema outbreak. Due to a very stressful situation in the family. I call it emotional explosion, because I looked like I was in an explosion. My skin looked burned and blistered. I had to scrape the skin of my face with a knife. I also have a granddaughter who is autistic (6yrs old). I am going to try your supplement recommendation. Thank you very much for all that you do. May god bless you and your the work that you do. Be well.

Trudy,
I am pretty sure that I have pyroluria and my psychiatrist wanted lots of tests done. He was from Arizona where there is lots of copper in the soils and suspected HIGH copper, but I am from the prairies in Canada and even though I had been taking HIGH doses of ZINC, my lab tests came back with both the copper and the zinc in the lower part of the range. At one point I did read that taking high Zinc doses could cause a copper deficiency.
Because of poor endocrine function and pituitary damage as well as poor digestion — maybe from low thyroid levels — I have been taking lots of supplements and my current functional medicine doctor says that I am taking all the supplements to “support” my endocrine glands — adrenals, but they are still not producing the expected hormones. I have not had a “fight or flight” response since I was a kid and I am 70 years old.

One thing that I am finding (I do energy work with another friend of mine) is that MANY people have LOW thyroid levels which are NOT identified because doctors ALL insist that testing the TSH (a pituitary hormone) tells them how well the thyroid is working. AND IT IS JUST NOT SO!! So many people that I know (myself, my 2 older daughters and my youngest granddaughter) need to have the actual thyroid hormones tested!! I also know a lot of older people who are having physical or mental issues who are told that their thyroid is fine when the actual thyroid hormones are below the ranges. This really upsets me that so many people COULD receive help and are NOT getting the help that they need.

I am so glad that you are sharing info about pyroluria since taking higher zinc and Vitamin B6 is really helpful to deal with some of the symptoms!! I am actually starting to dream and remember my dreams (and I believe that having better thyroid levels helps that too).

Trudy,
You really know your stuff! After I have this baby I’m going to have to come see you. I don’t have any of these symptoms except for disliking being seated in a middle of a restaurant!
Kiyla Fenell

Katherine
It does resonate with a lot of entrepreneurs who are big achievers and manage to push through their feelings of inner tension. And its amazing what a few nutrients can do to help in such a big way! Just make sure your zinc supplement doesn’t contain copper.
Trudy

Hi Louis
Zinc and copper balance each other out – when you have low zinc, you’ll have high copper and feel more anxious. You may have low zinc due to stress, sugar consumption, exercise, low dietary sources, malabsorption (often with gluten issues), pyroluria (genetic) or due to high copper exposure (very high nut consumption as in baking with nut flours, veggie diet, copper in pipes/water, IUD etc.

I’m so sure I understand your question – if the above doesn’t answer it could you please re-word it?
Trudy

Deb
Yes, Sue saw this and felt it was worth sharing with folks on her list. So glad you found it useful and were able to share it with your sister. If you score high, it’s always a good idea to have your sister/s and mom and daughter/s also do the questionnaire. And getting on zinc and vitamin B6 will make a world of difference.
Trudy

Trudy,
Wow! This is a lot to digest. ( oops, sorry about that! )
Usually I just clear up my maladies with my good friend Jack. This is quite a list to review, I will pass it on as there are a few people I know who might be helped by reading it.
Mitch

Carmen
That’s correct one-a-day vitamins are maintenance doses at best and if you do have pyroluria (or many of the symptoms, as you have indicated), you will need individual vitamin B6 and zinc supplements
Trudy

Whoa! What a list. I had never heard of this condition before and appreciate you sharing your expertise. Fascinating! I’ve been taking vitamins for a while now (pre- and post-natal) and now I truly realize the importance of continuing! Thanks. You are so knowledgeable!

However, it should be pointed out that several other nutrients are often critically essential when it comes to treating pyroluria — including manganese, niacinamide, magnesium, and sometimes evening primrose oil.

Kelly
Thanks for this and yes, you are absolutely correct. I find zinc, vitamin B6 and evening primrose oil to be key, with a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium. Niacinamide is really good when low histamine is the issue – often seen with pyroluria. Also each person is unique so this needs to be considered too. And more info is also available in my book The Antianxiety Food Solution 🙂 and future blog posts. I’m really only just getting started and can’t cover it all in one post, but appreciate you clarifying this.
Trudy

Trudy – very interested in your questionnaire. I am being tested next week for pyroluria as my holistic doctor says I have many symptoms of this – leaky gut, low zinc levels, anemic, damaged kidneys from Ig A proteins attacking them (gluten free to handle this) thyroid problems etc. Plus getting upset and angry without real reason. All good and makes a lot of sense this could be it. I have been gluten free for over a year which has made a huge difference but not resolved gut issues and sleep issues etc. Have been working for over 30 years as a fulltime exec and its taken its toll. I am 49yo.
My question is about my 26yo daughter – she is very pale, gets gut issues as well as sinusitis, and has incidents of very painful ovarian cysts to the point of doubling over and almost passing out, no appetite and chills/fevers. I see some of these symptoms on your checklist but not all. I want to get her tested too as it is genetic – have you found these other symptoms I mentioned are consistent with this same thing or should we be looking further. She is not gluten free but I am working on it, she is a high level exec working long hours but eats well and does some exercise. She is alcohol and drug free.
The really interesting thing on your questionnaire is about female likeness in families – the first reaction to people seeing us together is how alike we are – they always say this almost in surprise at the likeness!
Thanks – Sue

Sue
I’m really pleased the pyroluria questionnaire is helpful for you and I’m pleased your holistic doctor is testing you. You don’t mention anxiety for either of you – inner tension and anxiety is always seen with pyroluria. And yes, the female likeness in families in families is a very common finding.
If you do have pyroluria, please keep in mind that it is very likely just a part of the picture for you and your daughter – and yes, I suggest looking further. I’d consider an adrenal assessment and food intolerance testing for both of you – and possibly stool testing too. For you, anger and sleep issues could be related to low serotonin. For your daughter, when I hear ovarian cysts, I think PCOS, insulin resistance and sex hormone imbalances.
It’s great you are gluten-free and helping your daughter figure out if gluten is an issue for her too. All the best to both of you and try and work less hours if you can!
Trudy

Thanks Trudy and we went to see our holistic GP and told her our concerns for my daughter and she agreed with your comments above on tests needed so we are now organizing them to be done over the next 1-2 weeks. She is also having an IV Vitamin C, Vitamin B right now so that will also get her doing better while we sort the real cause of the problem. She is getting the pyroluria test as well.
Thanks again.
Sue

Sue,
If you and your daughter are having possible thyroid problems it is often helpful to make sure to also get the Free T4 and Free T3 tests along with the TSH (the pituitary hormone that stimulates the thyroid to work). And the levels for the Frees should ideally be in a similar level in their ranges and somewhere around the middle or a little above.

Thanks for this great info. I live in a rural area, and I’m having the worst time finding a practitioner near me, along the lines of what you do. I’ve searched holistic directors, etc. I’m willing to work with someone long-distance (online) if need be. I love your book, but I find that I really want and need someone to help walk me through it. When you’re dealing with possible pyroluria, all the attendant symptoms and issues, self-treatment is a major hurdle. Any advice? Thank you, thank you!

Hi Kay
You’re welcome! So pleased to hear that you love my book – thank you! I do work with folks over the phone and would be happy to talk to you about my programs. You can find out more here https://www.everywomanover29.com/services.html The first step is the initial 15 minute complimentary phone consult. I’ll send you an email too…
Trudy

Hi, both my son and I have been diagnosed with Pyroluria .
I have read that primrose oil (omega 6) should be taken instead
of fish oils (omega 3). Can you tell me the benefits primrose oil
will give us.
Cheers Anna

Hi Anna
The majority of pyrolurics tend not to need omega-3 supplements as they can absorb omega-3s from the foods they eat (grass-fed red meat, fish, leafy greens, walnuts etc). A few may need omega-3s and I suggest doing a fatty acid test if you can – then you’ll know for sure. Every pyroluric I have ever tested has always shown a need for gamma-linolenic acid (GLA) and the best thing for this is evening primrose oil. EPO helps with skin conditions like eczema, PMS, inflammation and actually improves the absorption of the zinc that is so important for pyroluria.
Hope this helps
Trudy

natural things like wheatgrass retention enemas at night for magnesium deficiency and pumpkin juice or checkens feet meat for zinc deficiency and potatoes for vitamin b6 issues and primrose oil remains unchanged ricebran oil and brazil nuts for vitamin e and selenium deficiency hope these help can take more of them if u prefer

Thank you for publishing this questionnaire, I haven’t read your book but I do intend to. I’ve been diagnosed with pyroluria and I’m taking Super Nu-Thera which contains P5P. I also need to take extra zinc. Do you recommend a particular type? Like piccolinate or chelate? Also some experts say dont ever take zinc without copper as it causes an imbalance which can be dangerous to the body, but you say to make sure the zinc supplement doesnt contain copper. I am glad i read this as I was about to purchase Now Foods L-Optizinc which has copper in it!
Finally, what do you think of a supplement from biopure called The Core Mineral which is for people with pyroluria along with other conditions? I have been taking supplements for 6 weeks now but I dont feel any improvement and am still succumbing to constant infections, which I think is low zinc. I will consider a personal phone consult with you since I am not improving so far.’ Thank you

Hi Val
Super-Nu-Thera looks good since it has 250mg vitamin B6 (and not P5P as you state). However 250mg may not be enough for you or you may need the P5P form or even a combination of B6 and P5P. The big question is this – are you remembering your dreams and are they pleasant? If yes, then you are getting enough vitamin B6/P5P (and the correct form).

I am not familiar with The Core Mineral but it looks excellent. It has a nice starting level of zinc (30mg is a good level to start at) but you may need more and taking a zinc-only supplement like Solaray Opti-zinc 30mg may be what you need. I have found Opti-zinc to be very well absorbed by most of my clients. Using liquid zinc sulfate is a useful way to assess your zinc levels. For someone with pyroluria I prefer a zinc supplement without copper.
With the correct combination you should start to see reduction of your symptoms within a week and resolution within a month or less.

I’d be happy to work with you via phone consultations to get you feeling great!

Thanks for your answer, the Super Nu Thera tub that I have here has only 25 mg B6 (Pyrodoxine HCL) (1250% Daily value), but I take 4 a day. Also it states at end that it contains P5P 25 mg. Anyway, I do need to return to my practitioner to tell her that it doesnt seem to be helping as yet. Maybe i need more time. She also prescribed Nature’s Plus Candida Forte, which has 50 mg B6 in it, and 50mg of Zinc (Ascorbate) per 2 capsules. I think the doses are high enough, but it could be that I’m not absorbing these as I should be. I am now on a gluten free diet and taking enzymes. I dont really remember my dreams very well, except just after I wake I can recollect some, most are not pleasant! Its usually anxiety moments of some sort, even though I am not terribly anxious. Thanks for the tip on the Zinc Sulfate I will try that as a guide. And maybe look into trying the Solaray. I am just going to download the Kindle version of your book and I’m excited to start reading it, thanks again for your help. I wil give this regime a bit more time before I abandon the practitioner & do a consult. Val

Hi Trudy,
Thanks for all the great info. My dad and I were both just diagnosed with Pyrolurria.
I am wondering how much evening primrose, zinc and P5P I should take a day?
I live in rural Mexico so its not very easy to get medical testing done.
Could you recomend a daily dosis to start with??
Thank you, Kelly

Hi Kelly
I suggest working with the health practitioner who diagnosed you with pyroluria. I start with zinc (30 mg), vitamin B6 (100mg) or P5P (25mg) and evening primrose oil (1300mg) with my clients, plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
Trudy

Hi Kuba
I am not familiar with this product but the combination of nutrients looks good. I looked online and found Depyrrol Basis and I’m sure you mean this one. I do think it would be a good place to start. You may find it works well for you or you may find you need to take each nutrient individually so you can control the amounts.

I’d love to hear back from you as to how it goes and if this did work for you. If you have the correct combinations you should start to see improvements within a week or two.

I just picked up your book (The Anti-anxiety Food Solution) a couple of days ago and can’t put it down! I feel as though you were speaking to me re: Pyroluria! I’ve been going crazy the past 3 years trying to find answers for my daughter. She is now 11, but has struggled with anxiety, depression, obesity, etc etc etc since she was 8. I am from a family of 3 girls, a Mom & Dad. My Mom, adult sisters, Aunt, female adult cousins, and myself (I am 41), are ALL on anti-depressants. (My Mom also has Celiac’s disease, which was discovered this past year). Because of this poor Mental Health history in my family, I assumed my daughter had what I have. She has been on 5 different antidepressants (is currently on Cymbalta), and we’ve seen quite a few therapists, but NOTHING is working for her. (I have been on Zoloft for 13 years, and have been great, but definitely had the same mental issues back when I was in my late teens… I just never told anyone). It is very sad, and I’m determined to find an answer for my girl. After checking off LOTS of symptoms on your checklist, I will look into testing her for Pyroluria (and then for me and all of my female relatives). We are scheduled to see a local Endocrinologist at the end of this month, and I’m very anxious to see what his thoughts are on this. (I would LOVE to visit with you, if you were closer to Maine). I am desperate for a solution. I want my happy little girl back, and am hoping that with your book’s information, I can figure things out! If nothing else, we are trying to eat better.
Many thanks!!!

Hi Amy
Thanks so much for the feedback on my book and the pyroluria section – I’m so thrilled it looks like it’s giving you answers (and hope) for your daughter and other family members! There is no pyroluria testing that I find reliable at the moment and I just have my clients use the questionnaire and then supplement, observing resolution of symptoms. It’s very likely that your endocrinologist will not be familiar with pyroluria – in which case, do share the chapter with him 🙂

Thanks, Trudy for getting back to me! If there isn’t an actual “test” for Pyroluria, can we at least be tested for possible low B6 and low zinc, as a guidance for what our blood may be lacking?? Maybe check for possible low iron as well? I will definitely bring your book with me to our appointment, but I want to make sure I insist on the certain blood work that I should have tested on my daughter. I don’t want ANYTHING to be overlooked!! Oh, and I’d LOVE to hear you speak! I’ll have to mark my calendar and bring my friends who have many similar issues and questions that I have. Can’t wait!!

Hi Amy
Zinc and B6 are difficult to test in the blood. I do suggest testing both iron and ferritin (storage form of iron). I’d also ask for a thyroid panel including the 2 thyroid antibodies (antithyroglobulin and antithyroperoxidase). I will send you the list of tests I have my clients do (and then create a blog post with this information)

Look forward to meeting you in Portland – please do come and introduce yourself
Trudy

I just recently stumbled across pyroluria as a possible diagnosis for my symptoms. I do have many of the symptoms listed. In my expierence, antidepressants only make my symptoms worse, and antipsychotics provide little to no relief. I do have a history of mental health issues in my family. Also, I have been tested for everything including thyroid, adrenals, b-vitamins, and everything checks back normal. Ive also tried every supplement except b6 and zinc with no success. Is psychosis part of pyroluria? Any suggestings if I should start taking zinc and b-6? Thanks in advance! Rob

Hi Rob
I’d suggest working with a nutritionist or holistic health practitioner who can help guide you (let me know if I can help you find someone). For someone with many of the pyroluria symptoms, vitamin B6, zinc, evening primrose oil and a good multi are definately worth trying. Pyrolurics often have food intolerances, so gluten may be a factor too, especially since you mention psychosis (2012 paper: Maternal antibodies to dietary antigens and risk for nonaffective psychosis in offspring http://www.ncbi.nlm.nih.gov/pubmed/22535227). Also low histamine or high histamine may be part of the picture too.
Trudy

Hi Trudy!
I started taking pyroluria supplements two days ago.I take:
Zinc picolinate 50mg
p5p 50mg
b6 100mg
manganese 5mg
EPO 1000mg
Vit.C 2000mg
B5 1000mg
I know i started with higher doses than you recommend but on the other hand in Depression Free Naturally i found formula with even higher doses.I’m gonna try my regimen for about two weeks and see if i improve.Do You have any suggestions about this?
I also have several other issues like type III allergies(gluten,eggs,diary and several others),sugar imbalances,lots of nutrient deficiencies(i’ve done hair mineral analysis).I didn’t test my histamine level but i’m 95% sure that i have high tissue copper level(pyrroluria,type A blood) and low histamine level.
After five years of problems(i got ill when i was 17 when i went to secondary school(boarding school)) i finally have lots of answers.But it was not easy to find them.In Poland(40 million people) no one heard about things like Orthomolecular Psychiatry or Functional Medicine.But of course there’s thousands of psychiatrists prescribing drugs.

Two weeks ago i started my new diet and i take my supplements and i’m waiting for results.I know things like copper detoxification may take a few months but i am sure that from now on things will only get better.

I’ve had some suspicions about my family and pyroluria. I have three siblings, two of which are girls (three girls, one boy). We have a resemblence, but do not look remarkably alike. My mother (who probably meets most, if not all, of the criteria for pyroluria) comes from a family of five siblings (four girls, one boy) but the girls do not look alike – well, aside from the set of identical twins, that is. Interestingly, I have read (Carl Pfifer) that boys in pyroluric families tend to have deformity and both my maternal uncle and my brother have had issues with abnormal leg/hip growth. I have one sister who has been diagnosed with schizophrenia (sp?) and another who is so incapable of handling stress she feels that she cannot go through life without chemical/alcoholic intervention. I don’t seem to have psychiatric problems but do answer yes to many of the questions on the questionaire.

I can’t afford to have myself and my kids tested (three girls and one boy) and I do have them on one tab of P-5-P per day, a multi, a general b vitamin (food-sourced) and one tab of food-sourced zinc. I give them the bs in the morning and zinc before bed. I’m guessing it’s not enough to make much of a difference, but I’m worried about giving them too much zinc. We’ve done the zinc test and the one who tastes something weird (indicating she has enough zinc) actually has more of the physical symptoms than the rest (morton’s toe, poor dream recall, stitch in side, dyxlexia, etc.).

Hi HipGrrrrl
Look-alike sisters are more common but even families with more girls than boys would fit if other symptoms are present. I have not seen eye problems or deformities with my clients who have pyroluria.

I don’t do testing anymore. I just rely on the questionnaire and a few other things (like the zinc tally/status https://www.everywomanover29.com/blog/zinc-deficiency-and-using-the-zinc-taste-test/ and low alkaline phosphatase). I also rely on the response to the nutrients and if the anxiety, inner tension and social anxiety go away, plus improved dreams, better breakfast appetite etc etc, we know we are on the right track.

Base your supps on symptoms – some of your children may need the B6 (eg poor dream recall) and some may need zinc and some may need both. There is no one size fits all.

I just came accross this site by accident and i am so happy i did! I just checked 19 of these symptoms! OMG…I never knew there was a name for what i feel..ie anxious, hating to be center of anything, panic attacks, constipation, dislike of criticisms…poor self image, insecurity (thats not on the list i know) and so on…i also have the strech marks and the white marks on nails and creaking joints etc…
anyway i recently purchased zinc (gluconate) 50mg (becasue someone told me it may help with strechmarks which ive been trying to get rid of along with my colds and infection) and a super B complex (becasue i have a dark patch on the side of my lips and a doc told me to increase vit B) so supringly these are the supplements listed to treat pyroluria!
My question is will the brand and i purchased help with the symptoms of pyroluria? The zinc i have is zinc gluconate (50 mg) and it does list magnesium stearate in its ingrediants, and super B complex which contiants multiple vitamin B along with vitamin B6 which is 5 mg.

Would this work to get rid of my symptoms? or do you reccommend otherwise? please let me know and thanx so much for your help and advice!

Hi Linda
Yes I do offer the hair test and it costs $60 -$80 (there are some different options). The kit can easily be shipped to you, you collect hair (they have great instructions), you send it back to the lab and they send me the results. Then we’d need to set up an appointments for me to review the results with you – there would be an additional cost for this of course.

Hair analysis is very useful for measuring minerals like zinc, calcium, magnesium etc, and for showing heavy metals like mercury, lead etc. It is even useful as a high level indicator of stress/adrenal function, blood sugar handling, sex hormone and thyroid function (there are ratios that are looked at)
Trudy

I have read alot of your site about pyroluria and am going to the store now to buy the supplements. I am having trouble finding the liquid zinc sulfate at the health food stores and at the ND dr. office. One store has a lizuid zinc by Trace Minterals that also has magnesim, copper, chloride, suilfate and a little boron. Can we use this one to do the zinc tast test? Also they have a bazillion brands for the evening primrose oil. Do you recommend any over another? They told me the Now brand was a good value. Thank you for sharing so much of this helpful information. Blessings, Nancy

Just got the B6, Opti zinc and evening primrose…scored 21 on the pyroluria questionnaire. Thank you for providing a starting dose. Feel sure this is my problem and hope I can get off my anti depressant. Went to my psych the other day told him all was fine, since I lost my job MUCH less stress and anxiety. His reply was that he thought I should up my dose of my anti depressant! It was if he wasn’t even listening to me!

Hi Melissa
It’s likely that when you have very low zinc, you’ll also have higher copper and hence don’t need additional copper in a supplement and certainly not in your zinc supplement. You also get copper from many sources in your diet – nuts, avocado, grains etc And most likely in your multi-vitamin too. For some people, even the additional copper in the multi is too much for them and in this case a copper-free multi is suggested.
Hope this helps!
Trudy

Are there signs you’ve seen when people have too much copper? My N.D. says that if taking more than 60mg of zinc I must add copper to avoid creating anemia.
I have noticed increased headaches and I am wondering if it is from the copper. I am going to slowly decrease my copper (2mg, but I am EXTREMELY sensitive). But I was curious your experiecne with copper.

I”ve been considering getting tested for pyroluria for years now, but being on medicaid, and being sick (w/CFS), has prevented me financially, but also brain-fog-wise, from getting the test done so far. But after reading about this (once again), I’m going to try to find an inexpensive test that hopefully can be done without a doctor’s visit.

I did have a Spectracell nutrient profile done about 9 months ago, and that showed all my “B’s” were borderline (except for b12) and my zinc and vitamin D were considered “deficient”.

But here’s my question: I seem to be intolerant to b6 — in any form or dose.

I was able to take small amounts of it for a 3-4 month period, about a year ago, as long as I took b2 with it — but since then, when I take b2, it seems to make my sensitivity to light much, much worse. It’s noticeable within a few hours, and lasts for about a day. Weird question, but could this be perhaps because I’ve been low in zinc for a long time and/or I have pyroluria and need to increase my zinc first…then add the b6?

Hi Dan
I have not had any clients with B6 issues but have many clients who are sensitive to number of supplements and foods. This is common when low histamine is also a factor (commonly seen with pyroluria). It may also be fillers etc in the B6 supplements you have tried.

I suggest saving your money on the pyroluria testing, especially if you score high on the questionnaire and have had the Spectracell test done. I think doing the histamine test (whole blood) would be more valuable.

Since this is a complex issue you’re dealing with, working one-on-one with a nutritionist or other holistic health professional would be my recommendation. I’d be happy to try and help – we’d start with a 15 min complimentary phone call and decide next steps https://www.everywomanover29.com/initialconsult.html. If I don’t feel I can offer nutritional help, I’d be happy to try and find someone to refer you to.

Hi Trudy!
I’ve got a question about Nutritional Balancing Program.What do You think about it?Would You recomend it for a copper toxic person?I’ve also got a Calcium Shell patern on my HMA.Would you recomend NB for me?

Hi Kuba
I am not familiar with Nutritional Balancing Program so unfortunately I can’t comment on this. I also can’t give you specific nutritional recommendations until you are a client. You can read about my programs here and set up the initial complimentary consult here https://www.everywomanover29.com/services.html I’d love to help if I can.
Thanks
Trudy

Thanks for your reply Trudy — and so sorry for my late reply. It has been awhile since I tried b6 or p5p, so I guess I could try it again in tiny doses. I did use reputable brands last time — probably Thorne, but maybe didn’t have enough of other co-factors at the time.

I read on another forum where quite a few people could not tolerate any b6, and on another forum where a woman had high serum b6 and found that by increasing her b12 considerably, she was finally able to lower the b6 and then later tolerate it just fine.

Thanks too for the offer of help and/or at least an initial consult — I appreciate that very much, esp being on SSI. I’m not sure what your schedule is like, but I’ll click the link, and go from there. 🙂

Hi Trudy,
Thanks for your webpage!
Five months ago I found out I am c677t hetero, I have been taking a heap of suppliments for it (L5 Metafolin, B12, fish oil, Thorne prenatal, CoQH, vitD)- I have just been diagnosed with Pyroluria (due to more tests after another miscarriage). Can Pyroluria contribute to miscarriage? Is there a safe amount of zinc and b6 during pregnancy if one has Pyroluria?

Hi Tanya
I am so sorry to hear about your miscarriage. Pyroluria is seen more frequently in all-girl families and you may see a history of miscarried boys. There is no research on a safe amount of zinc and vitamin B6 for pyroluria, during pregnancy so I would suggest working with a practitioner familiar with this condition and base the supplement doses on your symptoms and a retest of the pyroluria test (if you have access to testing).

That being said, there is research on low B6 and conception: “Poor vitamin B6 status appears to decrease the probability of conception and to contribute to the risk of early pregnancy loss” http://www.ncbi.nlm.nih.gov/pubmed/17478435. Vitamin B6 also increases progesterone which is needed for a healthy pregnancy. Animal studies show that zinc is also important for preventing miscarriage. Zinc is also important for healthy progesterone levels.
Trudy

Hi Tracey
You’re doing the right thing and hopefully you are starting to see an improvement in your symptoms…monitor B6 with dream recall and zinc with the zinc tally and possibly consider doing a fatty acid test.
Hair loss would be related to thyroid function so I’d look into that too. And obviously support the adrenals and take HCl, apple cider vinegar and sea salt to correct low HCl.
Trudy

Hi Trudy – thanks for this webpage and info – fascinating. Ive been strggling with health issues (22 of the most common pyroluria symptoms listed) for over 18 years.(im 46) Anxiety being the biggest battle. I have always felt there has been a ‘biological’ cause. Ive been researching more of late as I am seeing similar problems in family children (mine and nieces and nephews)and dont want them to experience what Ive been through. Ive noticed in previous posts that you suggest not doing the pyroluria test. Why is this? is it not a reliable test? What if test comes back negative yet the symptoms indicate otherwise? Are there other problems that have similar symptoms? I do know I have high histamine levels. Any thoughts? Do you know of any practitioners/docs in Australia? Thank and regards

You’re welcome! I just feel the questionnaire and your response to the supplements is enough. I do like testing in general – that way you know for sure – but I see a number of people getting negative results when they clearly would benefit from a pyroluria protocol.
I use other factors too – like pleasant dreams/good dream recall to indicate enough B6, the zinc tally and alk phos to indicate sufficient zinc and sometimes fatty acid testing.
Histamine imbalances are often seen together with pyroluria.
Trudy

Hi Trudy,
Two weeks ago, my 10 year old daughter was diagnosed with pyroluria (through urine testing). She has been suffering for about a year with acute anxiety attacks that came out of no where and always after an illness. We sought out therapy and were prescribed anti anxiety medicines. My daughter would be great for about 2 to 3 months and then the anxiety would strike again with a vengence and always after an illness. My daughter has many of the symptons on the list. The lack of morning appetite, extremely pale, etc. I have also seen documented that tiny bumps on the back of the arms are a symptom. Also, I have seen that “Morton toe” (where the second toe is larger than the big toe) is also a factor. As my daughter has both of these, have you ever seen this? My real question is where do we go from here? I have consulted our pediatrician with help in finding a nutritionist, and I also want him on board for future reference. We live in Upstate New York, and the medical field has NEVER heard of pyroluria. I am educating the doctors, as I want my daughter to be healthy and happy. Whatever she has, it takes a huge toll on her physically and it is diminishing her self confidence rapidly. Have you heard of pyroluria waxing and waning? I am also going to insist on a stool sample for my daughter as I am researching that many feel pyroluria can be caused by a parasite. Also, since blood work rarely shows any deficiencies in a pyroluric, are there more specific tests that I should request, as I believe that pyroluria is a piece of my daughters “health puzzle”? Any information from you would be so appreciated! Thank you so much for your insight!

Hi Lisa
I’m sorry to hear about your daughter and the acute anxiety. Knowing that pyroluria is a factor (there could be other factors too) will help a great deal! Pyroluria symptoms are made worse under stress so this may explain why her symptoms are worse after an illness. She may also be more zinc-depleted after being sick. Bumps on the back of the arm may be due to a fatty acid imbalance – also common with pyroluria. I suggest fatty acid testing and/or assessing the need for GLA (at a minimum). Second toe larger than the big toe may be high histamine (histamine imbalances often occur with pyroluria. A stool test may be helpful and blood work does show more than you realize when looked at from a functional approach.

I’d be happy to help you find a local nutritionist or work with you long-distance. You can find out more here https://www.everywomanover29.com/services.html The first step is the initial 15 minute complimentary phone consult. I’ll send you an email too…

Good for you for looking for answers so diligently and for educating the uninformed!
Trudy

Dear Trudy,
I am a nutritionist with interest in the same area. I am happy that we have discovered this tremendous public health issue and an easy “cure” (affordable, etc.) and yet my mind wanders to underlying causes and the need to pay attention to these. Treating with vitamins is better than most chemical medicine “cures” that mask symptoms, but perhaps not digging deep enough. My guess is this is a relatively modern syndrome resulting from contaminants (pesticides and hard metals or inability for body and brain to detox) – hitting against an older set of antagonists, that our bodies used to be able to deal with and no longer can. The older set could be anything from genetic propensity, to parasites; especially for cat lover: toxoplasmosis. (which 20% of Americans have, reportedly). Thus, while we treat with vitamins, for true homeostasis to restore, we also have to pay attention to ridding the body of hard metals (cleansing therapies), and parasites (for example the combination of worm wood, cloves and walnut), and food intolerance (mostly gluten and dairy) in my mind. Love to hear your ideas on this, and keep up the good work. Angela

It’s wonderful to hear from a nutritionist with an interest in this area! I totally agree with what you’re saying. We absolutely need to address toxins, parasites, food intolerances and anything else that is a contributing factor in terms of being a “stress” to the body. This includes a stressful lifestyle too, as any stress makes the symptoms worse. We may also need to improve digestion and detox capacity, provide adrenal support etc. Adding the nutrients to address the symptoms of pyroluria is just one part of it. And as you of course know, we are all biochemically unique so each person may need a slightly different approach.

Thanks for sharing! I’m pleased you bring this up because it’s part of how I work with people and yet folks reading this post as it stands, together with all the comments, may not be aware of this.

It would be easier to list the symptoms I don’t have! I am shocked. In the past, I’ve received weekly vitamin IVs but that doctor moved home which is about 5 hours from me. Zinc and B vitamins were among the contents of the IV. I need to do that again! Thank you for the info.

Boy, this is a good place to go to for practical informtion! You are most kind. I don’t have pyro but am in charge of someone who might (boy). One question: Your recommended starting amounts of supplements – is this the total for the whole day, or the dosage to be taken 2 or 3 times per day? Also, I hope your advice isn’t only for females. Many, many thanks & blessings. – Samia. P.S. Is more (supplementation) better or could it have a negative effect?

What an informative blog Trudy – there seems to be an increasing number of people diagnosed with this condition but very little authority on the best approach.
Having been diagnosed via a bloodtest with Pyroluria I went on high dosage supplements for 4 mths, after which I came off as they were really expensive plus my local GP felt the body corrects itself after 3mths. I have since had a blood test for zinc which was on the low side – naturopath said too low, GP said normal.
So my question would be, should we remain on supplements indefinitely? I notice during times of high stress my symptoms are worse and vice versa – is it all just about lowering our stress levels?

I am not familiar with a blood test for pyroluria and am curious about this and who offers it?

I can tell you this: if you do have pyroluria then yes, you do need to stay on the supplements indefinitely and even increase them during times of stress. The symptoms are typically worse under stress. And of course, your stress levels should be reduced anyway.

Regarding the blood test for zinc – it’s not a good marker of your zinc status so I wouldn’t rely on this. I suggest you use the questionnaire and your symptoms to determine if you need to stay on the supplements. If you score high on the questionnaire and feel worse when you stop the supplements then go back on them.

You don’t mention what supplements you were taking but I’m surprised to hear they were really expensive. A good multi, vitamin B6, zinc and Evening Primrose oil should not cost you much at all

I had a blood test measuring levels of HPL in urine – done through an analytical lab here in Australia (through a biomedic). I was put on 250 Pyridoxine B6, 50 Pyridxal 5 Phosphate, 200 Vit E and 1000 Biotin for day time and 1000 Vit C, 70 Zinc, 200 Vit E and 1000 Biotin at night – all done through a compounding pharmacy (hence cost I guess!). Also take Evening Primrose Oil.

I had a recent zinc blood test which although on paper is within range, I now take a zinc drink at night and it tastes like elderflower, so suspect that’s off!

Hi Kate
I’d appreciate it if you would share a link to the analytical lab.
And yes the fact that your nutrients were compounded very likely added to the cost. I like to use individual nutrients so each one can be increased or decreased if need be
Trudy

Hi Kate
I’m not quite sure why you said blood test – perhaps you had a blood test done at the same time? This appears to be a urine test and looks similar to the urine tests offered here in the USA. If you tested positive for pyroluria then you do need to stay on the supplements indefinitely and even increase them during times of stress.
Trudy

I’ve been researching pyroluria and most information on the internet, including blogs of several alternative doctors, warn not to self treat due to the side effects of high b6 (neuropathy) and zinc (possible copper detox symptoms and/or copper deficiency). I’m curious as to why so many practitioners guard against these side effects as my understanding is neuropathy is reversible and zinc toxicity/detox symptoms, shouldn’t occur if you go slowly.

What would you consider a safe upper limit for b6 and zinc? I’ve read up to 2,000mg total b6/p5p (Depression Free Naturally) and 60mg of zinc would probably be a safe upper dose to try without supervision.

I expect conventional medical doctors to give the warning against high dose vitamin supplementation but was a little surprised so many Naturopaths/alternative doctors do also, unless under a doctors care. I’ve not seen that with other high dose supplementation protocols, just with the pyroluria protocol.

Interestingly, Joan Larson offers a self treatment protocol in her book Depression Free Naturally and nowhere does she recommend trying the protocol only under the supervision of a doctor, and I believe she is one of the original experts on this condition.

I just wanted to check what upper levels you consider safe for self treatment. Thanks for any input.

Hi Paula
There are valid concerns around taking too much zinc and vitamin B6. I start with zinc 30 mg and go up to 60mg. I start with vitamin B6 100mg (pyridoxine) and go up to 500mg. I often add in P5P 25mg and may go up to 75mg or 100mg and then reduce the B6 – some people seem to do well on a combo on B6 and P5P, some just need B6 and some just need P5P.

And yes, Joan Mathews Larson is one of the original experts on this condition – she is amazing and her book is great! You mention “I’ve read up to 2,000mg total b6/p5p (Depression Free Naturally)” and I’d like to correct this. She recommends 500mg max a day of vitamin B6 and 100mg max a day of P5P.

And you should be taking a multi so you are also getting manganese and magnesium.

I think those are her starting doses. On page 154 of Depression Free Naturally (google books preview) there is a list of supplements for pyroluria. B6 has an asterisk next to it and if you go to the bottom of the page it says to “Adjust B6 until you can recall your last dream before waking. Do no exceed 2,000mg of B6/P5P combined.”

This is where I’m a little confused, as I know those are considered very high doses of B6. I think I’ll play it safe and follow your recommendations for 500mg B6/100 mg P5P maximums.

I have been suffering with a variety of symptoms for years. I came across your site and realised after checking the symptom list I could have pyroluria. I sent a urine test to bio lab and it has come back with elevated kryptopyrroles. However blood tests for zinc and b6 are said to be normal. My GP doesnt know what to do he is at a loss, the gastroenterologist is not interested I live in the UK. I would like to start supplements but am not sure what dosage, can you help. This has been going on now for 6 months Im fed up as no one is helping

Blood tests for zinc and vitamin B6 are not very accurate for assessing a deficiency. I suggest using your symptoms as a guide especially with the positive pyroluria result.

I encourage you to learn more on the subject. I have a whole chapter on pyroluria in my book The Antianxiety Food Solution. Joan Mathews-Larson’s book Depression-Free Naturally is also a great resource. I also do individual consults if that interests you.
Trudy

I have been diagnosed with Low T ( testosterone, I’m borderline but its still considered to be low ). I also have a lot of the symptoms listed for pyroluria. I think i scored a 40 on your questionaire. My question is could pyroluria lead or be the cause of my low T? I’m just trying to make sure I’m treating the root cause and not band-aiding the symptoms. Thanks

Hi, I also have tons of the pyroluria symptoms. Iv been searching for answers for at least 25 yrs. My symptoms increase with the slightest event of stress especially when I experience a traumatic event physically as well as emotionally. I never really sweat or burp any. My question is; is a loud odor of what I can only describe as a fecal/septic type odor coming off my skin and a sour smell from my scalp. I’m very clean and otherwise have no hygiene problems. I realize this happens when stress is elevated and has also gotten worse with age. Also the hair in the middle of my head is proportionally off, the front of my hair has always been twice as long as the back portion of my hair. (I’ve always had a patch of hair that was oddly shorter than the rest of my hair) I also have noticed the patch of hair on my right side has increasingly gotten thinner over time and seems to feel “steamy” to the touch?

Hi Aria
Low zinc can cause body odor and affect hair growth. I have not had anyone describe the type of odor and hair loss/growth you mention but I’d be interested to hear if you notice changes if you start to supplement with zinc.
Trudy

Hi again Trudy,
the truth is I’m not sure if the smell is coming from my skin or my sinuses. I also tested pos for environmental allergies and food allergies recently. The tests indicate unusually high allergy responses. I scored numbers as high as 6 which the allergist said never happens. My vit D and Iron levels are extremely low. My mother comes from a virtual all girl family (8 girls 1 boy & somewhat look-a-likes) and they all suffer from depression and/or psychiatric disorders as well as thyroid problems. I have atleast 85% of the pyrolouria symptoms. Thank you in advance Trudy for your expertise

Aria,
Keep us posted on your success with the pyroluria protocol. You may also want to consider histamine imbalances. Joan Mathews-Larson has a great chapter on this in her book “Depression-Free Naturally”.
Trudy

Will do Thanks Trudy. Its been about 8 days since I started on the pyroluria protocol and I feel like there’s a crack of sunshine peeking through the darkness. I feel less Inflamed and swollen. Others have noticed it also. Fingers crossed :).
Thx for this site it’s been such help.

Hi Trudy
I have just been diagnosed with pyroluria and been given a mix containing p5p and zinc picolinate. However I have heard that some doctors prescribe taking these two separately- usually b6 p5p in the morning and zinc at night. Something to do with them cancelling each other out.
Have you heard of this and do you k ow why ?
Thanks
Tim

Hi Tim
I have not heard of this or found this to be an issue. I do like to have my clients do the zinc and vitamin B6 separately for though and this is so we can increase or decrease them independently of each other, and switch to other forms if we’re not getting the expected results.
Trudy

Hi Trudy!
I am a licensed counselor and specialize in PTSD. I always encourage my patients to add in calcium magnesium and B12. I also incorporate diet, exercise and several other factors. I deal heavily with the somatic aspects of their conditions. I have ordered your book and am hoping for additional techniques I can add to their care. Best of luck!

Hi Sherie
How wonderful that you incorporate these nutrients, diet and exercise for your patients with PTSD. Adrenal support is also key when it comes to PTSD. If you’re not already doing so, I’d suggest teaming up with someone who can order saliva adrenal testing for your patients.
I’d love to hear back from you once you’ve read my book
Thanks!
Trudy

Hi Trudy, Just came across this page when researching pyroluria. I have many of these symptoms, however, no stretch marks or white flecks in the nails. Does this mean probably no pyroluria? (I am hesitant to try the protocol since I am already on a protocol of tons of things from my chiropractor.) I have low hair mineral analysis of manganese, lowish zinc, and lowish copper. Can this mean anything pertaining to pyroluria? Thanks for your expertise! 🙂
Michele

Hi Michele
You don’t say how many symptoms and if you have the classic anxiety and inner tension that is so common with pyroluria, that may have started in childhood and that you cover up how you feel. If you have the anxiety/tension and over 15 other symptoms you may benefit from the protocol or you may just need vitamin B6 and EPO (since you say lowish zinc and copper – but I’d need to see the hair analysis to be sure). The great thing is that if it’s going to work you should notice an improvement in 1 to 2 weeks. I’d encourage you to talk to your chiroparctor and get him/her on board too.
Please do keep me posted on what you do and what the outcome is…it helps others who read this blog – thanks
Trudy

Thanks Trudy! I have had depression since early teen years with what I percieve to be inner tension, and full blown anxiety the past 3 or so years, since after my second child was born. I take meds for depression/anxiety, but not a huge dose. They keep the panic attacks away and out of deep depression, but I still feel it to a lesser degree. The hair analysis showed manganese at .005 (ideal .025-.06). Zinc 13 (ideal about 15 – 27) and copper 1.3 (ideal 1.5 – 3.2). I definitely have adrenal fatigue, but am having trouble fixing that while raising 2 little boys. It’s impossible to avoid stress! 🙂 I definitely have at least 20 symptoms from your list above.

Hi Trudy – Six months ago I was diagnosed with very low zinc levels (2.4) by my GP after suffering lots of health problems. Research of low zinc lead me to Pyroluria and hence this page. Thank you for putting this page on the web. When my Dr. found low zinc six months ago she prescribed high dosage of zinc 100mg and B6 – with this I went into complete anxiety attacks – on returning to the Dr. she said she had seen this before and she had prob put me on too much zinc and slowed the dosage down. I have since found out(web search) that this was probably from the detoxing of Copper. I am slowly getting better but am not sure of what levels of zinc and B6 to take in the long term. Also the Dr. gave me Manganese free zinc supplement and I do not know why. I have not had the Kryptopyrol test as I had already started on the zinc and B6 so I thought it would be pointless unless I stopped the supplements which I am not willing to do. I have recently had my copper levels done and it was 22, I am presuming after 6 months of detoxing with the zinc, vit C and saunas that this has come down considerably. My retest for Zinc was 11 – so its on the rise. I have had a lot of the symptoms on your check list for most of my life. Most Drs. do not consider pyroluria. Can you suggest a basic list of supplements I can take to maintian a good level of Zinc and B6 plus other supplements you recomend ie evening primrose, manganese. I am a 59 yo female living in Australia
Thanks for any suggestions.
Jackie

Hi Jackie
I don’t really have much to say beyond what I’ve said to previous folks – please peruse the comments and my responses above. With my clients, I start with zinc (30 mg) and rarely go above 60mg, vitamin B6 (100mg, and go up to 500mg based on dream recall) or P5P (starting at 25mg) and evening primrose oil (1300mg), plus a good multi-vitamin (with manganese) and a multi-mineral and sometimes additional magnesium.
Keep in mind that there is no basic level as we are all unique and certainly with pyroluria, stress often leads to a higher need for the zinc and B6 for awhile.
I assume the zinc test was a blood test? Just be aware that plasma and serum zinc levels are not terribly good measures of zinc status.
Trudy

Hi Trudy
Thanks for your reply – I have downloaded your e – book and read the replies above. Yes it was a zinc blood test. I am doing the zinc taste test to determine how my zinc levels are progressing.
Thanks again
Jackie

Hi Trudy,
my wife has tested positive for Pyroluria and I have stared her on 50mg Zinc and 50mg P5P and she is doing really well. My question is she has a good dream recall now but she has nightmares every night. Does this mean that 50mg of P5P is too much or not enough? Thank you very much. Goran

Hi Goran
It great to hear your wife is doing really well! it could be too much or too little of even the wrong form of B6. I’d suggest having her reduce it to 25 mg P5P and see how she does and then increase it or even switch to 100mg B6/pyridoxine. Please let us know how she’s doing as you make changes.
Trudy

Dear Trudy,
My daughter was having anxiety attacks and feeling overwhelmed which led me to your book. I was so excited to read your book and realize that both my daughter and I probably had pyroluria. I began taking the zinc and B6 and my constant feelings of anxiety went away. If I forget to take the supplements for a couple of days, my anxiety comes back to remind me I need them! I just ordered the EPO. Now, I just need to convince my daughter to take them.
I want to thank you for your research and for the help you have given me. It has made all the difference in the world.
Janet

Janet,
Thanks for stopping by to let me know – I am so pleased it’s made such a difference. I do appreciate you commenting and I know others who read this blog will be encouraged and hopeful! Once your daughter starts to feel better she won’t look back … just have her commit to 2 weeks on the supplements and then she’ll be convinced.
Trudy

I have at least 29 of these symptoms, I have more of them on occasion.I have been diagnosed with bipolar disorder, and ADD, and I ended up here by trying to look for non medication alternatives for bipolar symptoms. Where can I get tested to see if this may be the real problem?

Hello. I have been intensively reading/aoto-traininbg myself to understand what the problem is with my girlfriend. I read (twice) and actually “studied” many books (Optomum Nutrition for the Mind; Primal Body, Primal Mind; Wheat Belly, etc) and will certainly read your book as well. My girlfriend scored 21 on this test!!!! Just to eb sure it’s not just a generic high-score test, I did it and scored 4 (and indeed, I have no anxiety or other emotional/psy issues). Her “mainstream” doctor just tells her to take anti depressants and to lower her stress in her life!!! After MUCH researching, I (an economist!!) “prescribed” her B complez (b6, etc.), zinc, magnesium, omega 3, GABA and 5htp… and after 2 weeks, she is feeling MUCH better! She is also seeing a dynamic and very “proactive” psychologist/”coach”… these combined give great results!!

What a great service you are doing to share your wealth of information! Thank you! Is there a lab that you would recommend where we could get the pyroluria urine test done ourselves without a doctor’s order?

Hi Kay
You are very welcome! It’s important to me that people know about this! I don’t do pyroluria testing with my clients and simply have them do the questionnaire and see how they respond to the supplements. I am looking into other labs for testing as the one I used to use no longer offers it and other labs I have tried do not seem to be as reliable. If you find one, please do share here. Thanks!
Trudy

Good afternoon Trudy,
my name is Shirley, i am from Slovakia, please would you give me some advice- in my country there is no chance to consult holistic doctor, who would know something about pyroluria.I learnt something about pyroluria only last week. Do you think I could have this condition? My symptoms: fearful since childhood, sometimes I have bad dreams, bad reactions to anxlyotics-I can´t take Lexaurin-bromazepamum-because it causes me mania, pale face, joints cracking, sensitivity to sunlight, frequent fatigue in the morning and during day- I sleep about 10 hours ev.day- in the evening I am fresh, but in the morning I am rather tired and sleepy, anemia, cold hands and feet, bad reactions to stress and some situations-e.g. I can´t live in a dormitory with other girls in the room, because I´m easily upset by them and I can´t concentrate on learning with other people in the room, I can´t drive too, because it´s too stressful for me, i am big introvert, loner, shy, hypersensitivite to other people, gossipry, violence in television, bad reaction to changes in general, rather crooked teeth- I wore braces several years in puberty, bad acne in puberty, frequent headaches from childhood. Thank you very much for answer and advice.

Hi Shirley
If you score is 15 or more, and it seems that is likely, you will probably benefit from adding zinc, vitamin B6 and evening primrose oil. I have my clients do this and then we look for improvements in symptoms.

The fact that you’re tired in the morning and during the day, and fresh in the evenings may be related to your adrenals. You may have low cortisol in the day and high cortisol at night – this high cortisol can also contribute to anxiety.

Hi Trudy,
Pyroluria questionaire- I identify with numbers 1,2,3,4,5,9,10,11,12,13,14,15,16,24,26,28,29,31,33,36,38,39,41,42.
Introvert traits- I identify with numbers 1,2,3,4,6,7,9,10,13,15,18,19,21.
Can I take venlafaxine-37,5mg daily- with zinc,B6 and other pyroluria supplements?
Thank you.

Hi Shirley
Thanks for looking at the introvert questionnaire and sharing your scores on this and pyroluria. I see many overlaps.

Typically zinc, B6 and EPO are fine to take with SRNIs and SSRIs but when I am working with someone who is taking medications that affect serotonin levels, such as a SRNI like enlafaxine/Effexor, I have them check with their doctor. You also want to have your doctor or other health practitioner educate you about serotonin syndrome and monitor how you’re doing.

Please let me know if you need some help navigating this and communicating with your doctor. I do offer long distance consulting.
Trudy

This is really interesting. I read the Huffington Post article and if I remember correctly I even commented on it.

I have often said there is a difference between feeling shy and being an introvert. I have heard the true difference between extroverts or introverts is whether you need alone time or social time to recharge.

I actually consider myself an extrovert but on any day I can take one of these test and be classified as an introvert. Maybe it has to do with my levels on that day.

Thanks for the information. Maybe it is time to add another supplement to my nightly set.
(I took the tests for you, HP ~ 1,2,3,4,5,6,15,16,17,18,23 Yours 1,2,3,5,9,10,12,13,14,16,17,19,20,29,30,34,35,38,41.)

Rose, thanks for your thoughtful answer! I see many overlaps for you. I find it interesting that you fluctuate between feeling like an introvert and then like an extrovert. There may be an explanation – pyroluric symptoms tend to get worse when you’re under more stress.

My name is Cynthia and I just learned about pyroluria and I have been reading several websites about this. I have several questions about the treatment and testing. First of all do we really need to get tested? Also how many times a day do we need to take the the B6 zinc and EPO? And do we take them all together? Many websites say it is dangerous to self treat is that true? I mainly suffer from severe anxiety since I was a child and now as a 29 year old adult I have episodes of severe anxiety on and off. I can be months without any symptoms but then as a get stressed it comes back. Could it really be pyroluria?

Hi Cynthia
I use the questionnaire and my client’s response to the supplements rather than doing pyroluria testing. It is common for those with pyroluria to feel much worse during very stressful times. The timing and amount of B6, zinc and EPO depends on each person and how bad their symptoms are and where they are deficient. My clients typically start on 100mg vitamin B6, 30 mg Optizinc and 1200mg EPO in the morning and we may go up from there based on dream anxiety, dream recall, zinc tally, fatty acid levels and so on.

It’s hard to say if you do have pyroluria. There are many factors to consider: what is your score is when stressed and when not stressed? do you get some of these nutrients in a multi or other supps? do you feel better when taking these supps?

If you have concerns about self-treating I’d suggest working with a nutritionist or integrative doctor/practitioner who is familiar with pyroluria.

I did score 20 from your questionnaire so I will start the vitamins. I can take the regular zinc and B6 from over the counter or is their a specific one that you recommend? Also what would be some side effects to watch out for?

Cynthia – yes I use over the counter supplements with my clients. I talk about forms in other comments in this thread – please check those out. For too much B6…peripheral neuropathy, for too much zinc or the wrong form…nausea. It is all detailed in the pyroluria chapter in my book. It’s too detailed to go into here 🙂
Trudy

Hi Chelsea
I have not had anyone experience flushing from vitamin B6. Could it have been vitamin B3, also called niacin? My clients typically start with 100mg vitamin B6 if they score high and don’t recall their dreams or have nightmares
Trudy

Hi Trudy – thanks for the info, the website, and taking the time to respond to all the queries. While the answers seldom differed, it was interesting to see the range of questions and your responses to them.

I have a question re one of the things you mentioned – low levels of alkaline phosphatase. Can you please explain a little more re how you interpret it? E.g. low = insufficient zinc or vice versa.

Hi V
You’re welcome! Zinc status is tough to measure and low levels of alkaline phosphatase (a zinc-dependent enzyme) is one marker of possible low zinc levels. I use this plus the zinc sulfate test/liquid zinc and symptoms, plus response to supplements. Here is a link to some research on this http://www.ncbi.nlm.nih.gov/pubmed/10441804.
Trudy

I have been tested for pyroluria twice because I scored so high on the questionnaire but both times it has come back negative. I was told it was due to having very low levels of zinc. I am supplementing with 30 mg of zinc picolinate and a bit of Vitamin B along with Borage oil. Is that normal to be tested 2 times and it come back negative? I truly believe that pyroluria is my issue. Do you think zinc picolinate is a good choice or would Optic zinc be better or a combination of both?? And do you find that some people do better on P5P than B6 or a combination of both? I am working with a holistic pharmacists that has studied pyroluria but she has not recommended P5P for me and only plain B6. I am ever so slightly better but have a long way to go.

Hi Jo
If someone has the symptoms and responds well to the supps then I don’t worry about the test. I’m curious, how high was your score?

You don’t mention who you did the test with? some labs are not as reliable as we’d like and I wish there was better testing available!

We are all different but I start my clients on the Optizinc and 100mg B6 and we go from there based on how they feel. Some do need to switch to another form of zinc and some do better on P5P or a combo of B6/P5P. It’s a matter of trial and error. I can’t offer you specific advice here but if you need more help with the combinations I do have a whole chapter on pyroluria in my book “The Antianxiety Food Solution”.

I’m glad to hear you’re ever so better! when you have the right combo and doses you should feel 100%.

Hi
Great reading! My 22 year old daughter had most symptoms and has a recent diagnosis of pyroluria. Extremely high copper and high histamine. She has been on supplements for 6 weeks. she has failed UNi, lost confidence and had put on at least 20kg (huge weight gain around her thighs hips and middle) although being on a very strict intolerance diet (no gluten dairy almonds lentils soy and eggs). Her headaches have stopped and she seems a little less anxious. She is still on ADHD medication. Will she lose the weight, regain her mental ability and be able to return to study?

Hi Helen
I’m so sorry to hear about your daughter but pleased she’s finding some resolution with diet and supplements. I really don’t have enough information to be able to comment on her longer term results and can’t do that here on the blog.

My main issue is actually binging and eating disorders in general. I’m gluten and sugar free but still binge massive on things like nuts, cottage cheese, especially eat nonstop for hours although things that are not junk. I have tried aminos in Julia Ross’s diet cure found out they didn’t work actually made me worse. Than in depression free naturally I came across pyroluria which explained aminos may not be working because of low b6. I’m in Turkey and can’t find any nutritional doctors but despite I sent my urine to UK for pyroluria testing which came up negative although I have many symptoms from list. So do you think eating disorders may be relateed to pyroluria and can you recommend any doctor from Turkey? Thanks a lot in advance

Hi Ayse
Rather than the pyroluria test, I rely on symptoms and response the zinc, vitamin B6 and evening primrose oil. If someone is low in these nutrients it can affect neurotransmitter levels as both zinc and B6 are co-factors that are needed to make them. This could be a factor in binge eating.

A few other things to consider:
– Binging on fatty foods like nuts and cottage cheese may be related to a fatty acid deficiency
– Amino acid quality and timing is a factor in how effective they are
– Underactive thyroid can affect how well the amino acids work

I’m sorry but I don’t have a doctor referral in Turkey. I’d be happy to set up a time to talk with you.

I believe I have pyroluria after using your checklist. My anxiety has gotten much, much worse as I’ve aged and I’m fearful about everything. I was wondering if one doesn’t have access to health insurance, what dose of zinc and B6 would you suggest to start with to see if it indeed does help? I’m at my wit’s end and was so happy to come across your article.
Thanks.

Hi
I did your pyro questionnaire and got around 28 yes responses – so I feel I’m probably suffering from this problem.
My question for you is regarding the liquid zinc test which I use to measure my levels.
But I find it confusing as I feel I get contradictory responses.
An example of this is yesterday my taste response was: an immediate taste of the liquid within a second or two that was not at all unpleasant.
Whereas today I couldn’t taste anything immediately however after maybe 6 or 7 seconds i began tasting it and it was almost unpleasant. I’m not sure what to make of this?
Are you able to offer any insight as to which is a more important indicator, the immediacy or pleasant/unpleasantness of the test?

Hi Liz
Yes, it’s unusual! Some things to consider: is the zinc fresh? is it zinc sulfate liquid? are these other symptoms of low zinc (see the pyroluria questionnaire)? did you eat something before-hand (this typically shouldn’t make a difference but you never know)? test it out more than once and have someone else do the test too.
I’m glad you like my site – thanks!
Trudy

I answered yes to 1,2,3,4,6,16.21,24,25,26,27,28,29,36,39,42. GP suggested Zinc, Omega-3, Vit D, St. John’s Wort supplementation since he knows I would prefer not to take antidepressants. Well, I ended up on an antidepressant without trying any of his suggestions because I am so exhausted after trying so many vitamins/supplements that have not worked in the past. This post has given me a bit of new hope.

Hi Trudy,
Thanks for the response. As for B6, I have always had trouble with B-complexes. I tend to get more anxious/aggressive depending on how much I take. But I was never sure if it was the B12 or the B6 that was causing this. Any thoughts?

WOW – I have been talking to doctors about my symptoms for years and years and have never been able to get any answers. I took your Pyroluria questionaire and have almost all of the most common signs and symptoms. Will get on B6 and zinc today!

I just finished reading The Anti-anxiety Food Solution. Thank you for an informative, concise & inexpensive guide, especially for those of us who are figuring this out all alone. I have already recommended it to 4 other women who have depression, anxiety, and/or sleep disorders.

I believe I have pyroluria and am about to get the liquid zinc, to test. I already have had no dreams since a very bad car accident/mild brain injury 25 years ago; could that have led to pyroluria manifesting, and/or B6 deficiency?

I did start taking tryptophan (500 mg, 3pm and 11pm) and it is really working; my mood is brighter, my impulse control is better, and I feel more able to tackle things every day! I’ve had longterm mild depression and 5HTP just wasn’t working. I then worked up to 3mg of time-released melatonin (11pm), because of longterm sleep problems.

I doubled the dose of tryptophan at 11PM and was having mild headaches the next day. Do I need to wait until my body adjusts to this larger does or should I go back to 1 500mg pill at night? Also, I am still not sleeping through the night. Should I take 4mg of melatonin at 11pm or take 1 when I wake up during the night?

I can’t wait to do the zinc tally test and start the pyroluria treatment; thank goodness I learned of this through your website and book. It may solve longstanding health issues for me, perhaps genetic… …or, a mild brain injury left me with mild depression, fatigue, sleep problems, and ADD-like cognitive issues. (At some point, I plan to try tyrosine, as you discuss.)

Thank you, Trudy, for sharing your expertise and years of experience with us!
Laura

Laura
Thanks for taking the time to post here – SO lovely to hear stories like this! Thanks for sharing it with others 🙂

Pyroluria is made worse by stress and a car accident could be factor.

I can’t give you specific advice here but will say this: too much of any of the aminos will cause a reverse effect and more is not necessarily better; tryptophan can be taken with night wakenings and additional melatonin may help (provided you don’t feel too tired in the morning); sleep issues can be low serotonin or low blood sugar or food intolerances or high cortisol or bad sleep hygeine (tv, computer, emfs etc) and even parasites.

I have a feeling the pyroluria is gonna prove an important factor; I just completed a (quite stressful) masters program and was far away from home for several years. Now that I am back home with my dh, my health has crashed.

With the new pyroluria info which I now have (again TYVM), and with reflection, I can see I have a life-long pattern of crashing after stressful life events (a family death, the masters, leaving a job, moving…); each time I HAD to have a recuperation period …unlike most other people who just seem able to roll on.

Today, I did the zinc tally test (got a 1 or maybe 1.5). I already do not dream at night, and I had 23 positives (17 of them the common signs) on your pyroluria test. So I am starting B6, zinc and EPO today, along with a daily B vitamin; slow dose changes and lots of observation of reactions… …as well as re-reading your book and going to get Julia Ross’s and Joan Mathews-Larson’s books.

I am assuming that adding the B6/zinc may help boost the tryptophan & melatonin, which I already (successfully, yahoo!) started.

Unbelievable that such a relatively simple fix to a vitamin/mineral deficiency is not more recognized and treated by family doctors and ob/gyns, the women’s doctors!

I can’t wait to see where this takes me ! I’ll keep in touch on your website…

Hi Jay
I have not and until I looked it up I was not aware of this condition. I’m curious why you’re asking? Do you or someone you know have symptoms of pyroluria and focal musicians dystonia?

I do see some overlaps with dystonia and mood so it’s possible there is a connection:
(1) “it is now thought that people affected by dystonia are more likely to experience mental health conditions such as depression, anxiety and OCD even before the physical symptoms of dystonia appear. It is not known why this is – but it appears that whatever causes dystonia may also affect mood and behaviour in some way.” http://www.dystonia.org.uk/index.php/about-dystonia/dystonia-and-mantal-health
(2) “An additional relation between dystonia and mental health conditions is that some drugs used to treat psychoses can cause tardive dystonia / dyskinesia. With the new generation of these drugs (called dopamine receptor blockers) this is much less likely than it used to be – but unfortunately a small risk remains.” [also from the above dystonia site]
(3) Recommended drug treatments are also often used for anxiety and depression http://www.dystonia.org.uk/index.php/about-dystonia/treatments/drug-treatments I’d suggest assessing for low GABA, low serotonin and low catecholamines and determining if amino acids may give the same relief
(4) If you have pyroluria, you’ll have low levels of zinc and vitamin B6, key co-factors in making serotonin and GABA and other neurotransmitters

thanks for a wealth of information you posted. I just found the post and will look through all of it; meanwhile, I started taking B6 (Pyridoxine Hydrochloride) 120mg and Zinc USP 60mg 2 weeks ago and do find some relief already. As you may have guessed, I have had dystonia for a long time and had to put a professional musician’s career on hold, and when I read your site, I found that I have a large number of symptoms from your list – I am hopeful.
Thanks again,
Jay

NB: please let me know if the dosage is about right. Doctors I talked to did not recognise this condition.

Jay – thanks for sharing. I am so pleased you’re hopeful and finding some relief. Is this from the social anxiety or the dystonia symptoms or both? I’d love to hear what has improved and how much. It’ll help others who read this blog!

The starting dose I use is 100mg B6 and 30mg zinc and slowly go up to 500mg B6 (based on dream recall and symptoms) and 60mg zinc (based on symptoms and zinc tally test). I can’t give you specific advice via the blog unfortunately.

But I will talking about pyroluria on my upcoming online summit – The Anxiety Summit – June 9-22. You can get access here http://www.theAnxietySummit.com I’m sure you’ll pick up some good stuff from many of the other speakers too. Hope you can join us!

I am just blown away by listening to you on The Anxiety Summit!! I just listened to the interview on Pyroluria. I have always wondered why I am the way I am! Pyroluria. I think I have this. I scored 20 on the symptoms list. I always just thought I was an introvert. I have always been fearful since childhood! I have also been primarily vegetarian (fish once in a while, chicken or turkey rarely) for the past 8 years. No dairy. I have been so hung up the dangers of meat eating and how it is linked to cancer. I have lots of cancer in close relatives who are heavy meat eaters so I have always shyed away from meat. The literature I read is that animal protein is linked to elevated IgF-1 in the body which can lead to cancer. I have read where it is better to get your protein from plants and follow a plant based diet. It is so confusing out there. I have followed Dr. Joel Fuhrman’s protocol for 8 years. While I have improved in many areas, the emotional area not so much. Can you still be a healthy vegan if you supplement but do not eat animal protein? I think a symptom of pyroluria is a “fear” of disease from eating a animal protein diet.. Yikes, what to do. Dr. Fuhrman also frowns on taking isolated supplements like B6 or Zinc. He believes it causes other imbalances in the body. I am tired of not feeling 100% so I really want to try the supplement protocol and see what happens. I have taken EPO for years, 1500 mg. It has helped with menopause. I am 62 years old. Menopause was extremely rough; this happened at age 47. I suffered from horrible panic attacks and anxiety during that time. That has thankfully resolved. I appreciate all the work you are doing in this area and look forward to downloading the Kindle version of your book. I love the anxiety summit and have learned so much. My husband has over 20 of the symptoms also so I may put him on the same supplement protocol. His symptoms are even more exaggerated than mine. He has told me for years about the strange, bizarre dreams he has. He is also no nervous and anxious all the time, has anger issues, no attention span, and totally antisocial. Thanks again for all your knowledge!
Elise

Hi, I cannot tell you how much I have been enjoying the Anxiety Summit. I had been searching for information like this so the timing has been perfect! Thank you for this questionnaire. I scored 29!
I am hoping you can guide me on something. I have an adult handicapped daughter that I believe is affected by this in a huge way. She is 35 but maybe 3 mentally and is non verbal so some of these answers I can only guess at and use observation. The problem lies in that she lives in a group home and they must adhere to strict protocols and cannot give her anything without a prescription, even sunscreen!! Even though I live in the DC metro area, good luck finding a doctor who knows what this is AND accepts her Medicaid. We also have an MTHFR defect and I am struggling to get her help with this.
She has severe OCD, anxiety, and self-injurious behaviors. She isn’t used to going to a day program and she just really pitches a horrible fit when they try and coerce her. I think this is her way of showing social anxiety and is very much “overwhelmed in environments with excess stimulation”. Instead of the harmless zinc and B6 she is given Seroquel and Prozac. The new psychiatrist even wanted to give her Buspar and it was my turn to pitch a fit! It makes me sick to my stomach that I have so little control but we cannot get her off these meds without replacing them with what she DOES need.
I just do not know how to go about this. Any suggestions?

I don’t have an answer for you about your daughter right now and will post on an integrated forum I am part of to see if someone has some ideas. It’s very sad that you don’t have a say. The good thing is that you know about better options and just have to find a way to help her with them.

My mom had NO sense of smell (which was always a curiosity) and she fit so many of the other questions. Miscarriages, social discomfort..so worked nights)
I had /have terrible nightmares (or at least not such good dreams…when I remember them) and terrible car sickness, as a kid, nausea in a.m.s, light and noise bother so much lately and have spent three years in ‘isolation’! SO MANY want/have wanted to label everything ‘mental illness’ and I know i am not crazy!..AND getting on those supplements ASAP!!!! Thanks you so much, and I wish I had known this for the pain and suffering both my mom and sis endured (both no longer alive).

Hello Trudy,
I left my numbers on the other quiz too. For this one I got: 1, 3, 10, 12, 14, 17-20, 26, 27, 30, 31, 35= 14…..barely made it, lol! After listening to the summit and reading this page and the other one with Carolyn’s article I feel that my symptoms are related to endometriosis (& all that it comes with) or PTSD. I have added this info to my toolkit though so if I start feeling “out of wack” I have more options than medications. Thanks for all the insight on zinc and B6!!!!

I left my numbers on the other quiz too. For this one I got: 1, 3, 10, 12, 14, 17-20, 26, 27, 30, 31, 35= 14…..barely made it, lol! After listening to the summit and reading this page and the other one with Carolyn’s article I feel that my symptoms are related to endometriosis (& all that it comes with) or PTSD. I have added this info to my toolkit though so if I start feeling “out of wack” I have more options than medications. Thanks for all the insight on zinc and B6!!!!

Hi Trudy
I’m so glad I found your anxiety seminar. I finally feel like I’m on the right path of figuring out the anxiety that runs in my family.
I and many family members have symptoms related to severe anxiety and social anxiety, gluten sensitivities, blood sugar problems, insomnia/sleep problems, memory problems, skin rashes. I hit many of your symptoms on both lists. I had 18 on the introvert list: 1,2,3,4,5,6,7,9,10,12,13,14,15,16,18,20,21 and 23
I had 21 on the pyroluria list plus 8 more on the not as common list: 1,2,3,5,6,9,10,12,13,14,16,18,19,20,21,24,25,26,27,28,29,30,31,32,35,36,38,39,41

I’m sad I missed your talk on pyroluria. I tried to access it today monday but it wasn’t available. I did hear the one on adrenal healing by dr Day and am looking forward to listening to more and researching pyroluria. Thank you for all of this information I just need to figure out where to go from here.

Hi Lisa
So glad you’re on the right path! thanks for sharing your results from the questionnaires.
Mine aired on Sunday until 8:59am today – sorry you missed it!
We’ll be voting for the top 5 for replays so stay tuned
Did you see the blog post for my pyroluria call? some good stuff there
Trudy

Hi Trudy,
I’ve been enjoying your summit very much and so impressed how your answering everyone here. I took this test on a whim to see if it even sounded familiar and I have nearly all of these! As a kid I had inner tension being shy. I’m in my second adrenal crash today I just found out this week. I never felt like eating breakfast. Lately my appetite has been poor. My joints,(knees) always crackled! I am very pale, and burn easily. I was once a vegetarian. My eyes are sensitive at nightime to light. I always use sunglasses in the day. Stiches when I ran as a kid. Fatigue more and more. LOW IRON ALL MY LIFE! Just found out my Ferritin level is again only 5. I WANTED TO find out WHY. I am gluten sensitive, which solved some of my issues 3 years ago. Stress, our family has so much of it. Small gatherings yes, but I’ve forced or taught myself to not be sensitive to critism. Inflamed gums…on my gosh…how can this be?
I”m in a slump right now, with my severe anemia and adrenal crash. And not sure where to start. I don’t have a doctor that will test for anything here. My Functional Med. doc is off for 6 months. I studied natural health 20 years ago so have found most of my own answers. We have 3 boys with autism, one with OCD and I think I”m a little OCD. I work from home, and TYpe A personality and now that I’ve crashed again, have to figure out a way to get back up, but properly! We just lost our home in a house fire, July 2013, and lost our business and lived homeless for 6 months. I can take alot of stress, but it has finally caught up with me. I need to rebuild my health so I can be here for my boys (and help them too) and already take so many vitamins. (Bcomplex, Iron, Magnesium, Vit C, Cod Liver Oil, gelatin, Kelp) and don’t want to throw in more that are not needed. What do you suggest Trudy, where do I start? Will treating this solve my chronic anemia problems? Would I understand this more in your book? I’m so exhausted with our life, still trying to figure out where we will live, and so depressed about our future. What do you suggest that would be best for me right now? Could this be an answer to all my life? Thanks,
Rita D

Rita
Wow, you have been through a lot – I am sorry! – but I’m so glad you’re finding answers here. You’re asking a lot of questions here 🙂 and unfortunately I can’t help via this blog. It sounds like you need to find someone to work with – it’s very challenging trying to figure this out alone, especially when you are so tired. My book does spell out all the supplements for pyroluria and adrenal support, and I’d be happy to do a phone consult if that would help.
I do agree that supporting the adrenals and addressing the anemia will make a world of difference.
Trudy

PLEASE!! Aren’t there some people who genuinely do not like meat, particularly red meat?
I have never cared for it much even as a child and the smell, thought and look of it is a complete turnoff!
I do eat organic eggs, cultured organic dairy, some small amounts of organic chicken, and fish.
I would eat more fish (and used to) but much of it is not safe now either.
I have always craved tuna fish (never meat) but now hardly eat it because of the mercury!

I am blood type A.
What is your view on the blood type diet/philosophy?

Thank you for your time and information, and thank you for putting together this summit!
It is gr

Hi kd
You’re welcome! I agree that type As may do fine with less red meat. But when I hear an aversion like you describe I think low zinc. I just see my clients do so much better with red meat that I always try and encourage them to eat it but we do need to find a way for it to be enjoyable
Trudy

So happy I found your web site. I am a naturopathe and have tried many, many things to improve my situation. Some helped, but still I am still anxious, stressed out, lot of food allergies, eczema, fatigue,depression, etc. I just bought your book today,I can’t wait to read it!

I score 23 positive on the pyroluria test and have really mild taste on zinc test­. I already take almost all the supplements you are talking about, but I guess not in enough dose, and I don’t take GLA right now, wich I will add to my protocol.

I have an heriditary blood condition called sphyrocytosis, so my hemoglobin is always low. I read that kryptopyrroles are generated during the synthesis of hemoglobin. Because my spleen is always distructing my red blood cells, my body is always generating new red blood cells to compensate. Could there be a link there why I have so much difficulty to get well? I also have à deadly nuts/peanuts allergy. I take some omega-3 from time to time, but I guess I should take more.

Hi Nathalie
Great – you’ll get a lot out of my book!
I’m not familiar with sphyrocytosis and have not heard of a connection to pyroluria. If we were working together I would make sure you have the correct amounts of zinc and B6 and EPO (and possibly do fatty acid testing). I’d also consider genetic testing
Trudy

I responded yes to around 20 of these questions! Do you know what causes the pain in the left side? I am in the process with my doctor, or trying to figure out what this is and I am wondering if it is a symptom of pyroluria rather than the alternatives we have been looking at! Thank you for all of the wonderful information. I have ordered your book and cannot wait to read it!!

Thank yo so much for this information Trudy! My 13 year old daughter is suffering from many of these symptoms. Major social anxiety (she has no friends) and low mood are her main issues as well as a very limited diet. She will only eat cereal, toast/bagels, pasta, pancakes, fries/hashbrowns and sometimes chicken strips (but only take-out not homemade). She will occasionally eat apples, blueberries, grapes or carrots. She will sometimes tolerate a smoothie (but not if I add any protein powder). We have tried to expand her diet for years with no success, she will gag and become very emotional. Even the smell of certins foods makes her nauseated. I suspect a gluten allergy but if we took that out of her diet she would have nothing left. She will not swallow or chew vitamins other than flinstones (which I know are terrible). She will not eat any other sources of protein (eggs, almonds, meat) but will eat peanut butter. I am sure her diet is affecting her mood significantly, althought she has exibited anxiety since toddler age. We have a naturopath who made some excellent nutritional suggestions but my daughter won’t eat anything suggested. She gave her some homeopathic tinctures but we did not see improvement. I am wondering where we should start? I do think she would take a zinc supplement and/or B6 as long as it was small with no odour or flavour. Do you start with your same recommended does even for children? Also, we are in Canada, not sure if anyone her specilizes in this area?

Hi Dina
Here are some things that I would consider:
– First an amino acid trial – tryptophan and/or GABA – both are calming and could help break the carb addiction
– I’d also focus on zinc (assuming it’s low) as this could help with protein intake
– Vitamin B6 does help with the nausea and this together with the zinc and aminos would help the mood
– I’d also check blood work and make sure iron anemia is not a factor

For kids of 120lbs I start with adult amounts (or less if they are sensitive)

Let me know where in Canada you are and I’ll see if I can refer someone. I’d also be happy to do a phone consult.
Trudy

I am back again! At this point, I am taking 60 mg Zinc and 240mg B6, but will increase the B6 to 320 mg. I take some of it in the morning, some in the evening and will take the additional 80 mg B6 around mid day. The 75-80% relief is felt in the tremor/dystonia.

The main symptoms have always revolved around the tremor/dystonia disorder in the right hand which set on fully around the age of 20 and severely crippled development as a professional musician. Anxiety/depression born out of the devastating experience of completing a course of study in performance with this disease was the other driving component of a vicious cycle, additionally fed by inappropriate diagnosis and complete lack of medical support through inability to diagnose correctly.

There are many musicians suffering from similar issues and it is important that this information gets out and can maybe alleviate a lot of suffering.

Jay
Thanks so much for coming back and sharing your improvements. I am so happy for you! This is just wonderful!

Thank you too for enlightening me. I just presented on pyroluria to the National Association of Nutrition Professionals and shared your story – so we’re getting the message out there. If you know places to share this blog with other musicians please do so.

I would also suggest looking into the possibility of a B12 deficiency – one of the symptoms is the tremor. You’d want to test B12, homocysteine and MMA/methylmalonic acid. Sally Pocholok’s book “Could It be B12” is a great resource.
Trudy

Thank you for directing me to this wonderful resource (and I love reading your book!)…

I am wondering about Pyroluria – it has opened my eyes in thinking about how to address stress, anxiety and depression which seems to be common in post-partum mothers that I see in my office. A couple questions for you: 1) can Pyroluria be triggered by pregnancy? Exacerbated by pregnancy? 2) Does having Pyroluria put a person at an increased risk of post-partum anxiety? and finally, although this doesn’t seem related, it may be… 3) Is increased thirst associated with Pyroluria? Many breastfeeding mothers I see who have increased levels of anxiety also report excessive thirst (as well as increased urination, and sweating)…all of which I naturally chalked up to hormonal changes after baby arrives, but the idea of a person’s reduced ability to absorb/utilize B6 and zinc has me wondering if it’s more than hormones and maybe Pyroluria. And the need for B6 and zinc in hormone balance post-partum certainly seems like this is a critical time to address those deficiencies.

Sarah
Great questions I don’t have the answer to except to say that high copper (and therefore low zinc) can be a factor in post-partum anxiety so it’s possible that those women have pyroluria and the “stress” of pregnancy and hormone changes could trigger symptoms.

In general, I have seen zinc and vitamin B6 to be crucial for hormone balancing at various stages of life – for teens with PMS and/or heavy periods, PMS in older women, during perimenopause and menopause – so it would make sense that they are also important during pregnancy. I just haven’t worked with enough pregnant women to know.

Sara, copper is necessary for angiogenesis, so copper rates in women go way up during pregnancy as the fetus needs to form blood vessels. Copper tracks with estrogen – perhaps to allow for this increased need during pregnancy – for this reason, many women with PD will have increased symptoms during high-estrogen times of the month. In many women with pyroluria, the body burden of excess copper is already high. Post-pregnancy, women with PD — low zinc — will have a hard time getting those copper levels down again. Zinc is what prompts the body to make ceruloplasmin and metallothionein, the proteins that bind to copper and allow it to be utilized and excreted by the body. This accumulation of excess unbound “toxic” copper is further compounded in people with MTHFR mutations, who have problems with metal excretion in general. Pyroluria and its attendant copper toxicity play a major role in postpartum mood imbalance.

Also, B6 is involved in fluid retention (regulates sodium/potassium balance), so that may be a factor in the excess thirst? Here’s a great article I found recently on all the important things B6 does in the body – the range may surprise you:

One last thing, for any animal lovers out there: Dogs can also suffer from pyroluria. My dachshund’s severe social anxiety (quite common in her breed) has dramatically improved from supplementation with zinc + B6. I use Zinpro (zinc supplement formulated especially for digs) (although I’m sure a titrated dose of “human” zinc would be fine) + 1/8 capsule of powdered B6. Speak with your vet, of course. 🙂 And good luck!

Hi Trudy! I’ve been following your pyroluria protocol for about two months now (along with taking your ‘amazing amino acids’) and I feel wonderful. My anxiety is completely gone. My question is about the B6. Is there a limit to how much you can take? I still don’t remember my dreams. I changed to the P5P (up to 100mg) when 500mg of B6 didn’t help with dream recall but that didn’t make a difference. I’ve also tried taking a combination of both of these without success. At this point I really couldn’t tell you how much I’m taking because I just shoot a couple down the hatch whenever I see the bottle sitting on counter. I’m pretty sure I’m exceeding the maximum amounts you recommended. Can you give me any insight into what I should do from here?

Hi Nancy
I’m so glad you feel wonderful and don’t have any more anxiety! When someone is feeling great with no anxiety and none of the symptoms I recommend staying on a maintenance dose of 50-100mg P5P.
Trudy

Hı after my nose operation I got cold and realized that I smell very low and taste. Now some things I smell are like burnt. I live in Turkey. Should I do Zunic test? Because I used so many antibiotics. After I take it to my mouth should I swallow it? Please inform me about the process.

Thank you Trudy for making yourself available to all of us who have been in the dark for so many years. I am now 57 years old and I have been suffering with all but 4 of the most common symptoms all of my life! I just thought it was how I was born and never thought to question any of it or seek “a cure”. If I had only known I could have had a different life. I see some of these same symptoms in one of my daughters and I will be passing this on to her. perhaps her life will not be as hampered as mine. I now have a battle plan thanks to you and will be moving forward. Thank you ever so much.

hello. i believe i have pyroluria after researching and had a question if any connection with high iron serum. my dr does not believe in this been on anti depressants for years. my iron count was not hat high three months prior or any other time. well i wanted to start supplements but dont know if safe with high iron but dr said not that high. so i am not sure where to go from here.. no drs in my area. how do i know methlation etc. i have hsd urine test for all the metals was fine and blood work did not show much deficient in vit d and c a little low in b vitamins. hormone imb. please let me know if you have suggestions. thanks. i do have nutriplex b complex and wanted to get the primrose and zinc to slowly start…

Hi Trudy,
Am I understanding correctly (from your book) that Zinc supplementation for pyroluria should be monitored by the zinc taste test and when the test shows sufficiency the supplemental zinc should be stopped?
After sufficiency do you suggest doing the zinc taste test on a regular basis to monitor zinc levels to see if there is a need to resume supplementing with zinc?
Do you see your clients needing to take zinc on and off to maintain sufficiency?
If there is no change taking 30mg of Opti zinc do you suggest increasing the dose of Otpi zinc before switching to another form of zinc?
Will you please give some insight and clarification into this?
Also, is supplementation with B6 and GLA ongoing? Thank you!

Hi Rose
If you have pyroluria zinc and vitamin B6 supplementation is forever (GLA too often). I use the zinc taste test to get levels up and then continue to use it make sure the levels are good (I think this answered your first 3 questions and the last one).
I do increase the Optizinc to 60mg with my clients and then switch to another form. Remember that adding and/or increasing GLA can help with zinc absorption.
Hope this helps
Trudy

Hi Trudy. I have many of these symptoms and also have been in a state of depression for several years. I have been taking the B6 and zinc, but don’t notice much difference in my social anxiety or depression. I am taking 5HTP twice a day.

Also, my granddaughter seems to have some of these symptoms; does it skip a generation?

Hi Trudy, have you come across many couples both having pyrrole disroder? my husband & i both have it, my mum & dad had it, my daughter & her partner have it, seems pyrrole sufferers may be drawn to those who also have it!?

Cheryl.
Thanks for sharing – this is very interesting and yes I have come across this. My husband and I both have pyroluria. I interviewed Corey Schuler on the Anxiety Summit (and he interviewed me for my pyroluria topic) and he mentioned that both him and his wife have pyroluria.
Trudy

I got 32 of the questionnaire. And most of them are VERY ME. But, there are some pyroluria symptoms that I don’t have.

For example, I remember dreams very well and always have.
I also have a very large appetite.
I am pale, but not naturally. I just choose to avoid the sun.
I have a pretty good memory of past events and people.
I don’t dislike protein, though I much prefer carb meals.

Other than these, this list fits me exactly. But I’m confused because many places use the dream recall as a major symptom of pyroluria. Have you had many clients who dream well, but still have pyroluria?

Aya
Poor dream recall or having unpleasant dreams/weird dreams/nightmares is a classic pyroluria symptom because it’s due to low levels of vitamin B6 which is a common pyroluria deficiency. It’s possible you have only have low levels of zinc or that despite remembering your dreams you are still low in vitamin B6. The best way to know is to try the protocol and see if the anxiety symptoms resolve.
Trudy

I was recently diagnosed with pyroluria through a urine test. I have so many of the symptoms but in the past they were shrugged off by doctors. I have a new doctor and she said let’s test for pyroluria, which I hadn’t heard of before. I just started taking a b consoles today but my stomach became upset after taking it. I took it with a meal. Any tips?

Hi Heather
I’d suggest discussing this with your doctor – I’m so pleased she was willing to test for pyroluria! If she doesn’t have answers for you I’d suggest starting with individual vitamin B6.
Trudy

I think it is, at this point, safe to say that the pyroluria treatment is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing. Your advice and encouragement have been, and still are, very helpful – they are the only outside professional help I have had through the process. If there is any way I can help you establish the connection between pyroluria and dystonia in your professional environment, I will certainly be glad to do that.
Thanks again,
Jay

Jay
You are so very welcome! I’ve appreciated the dialogue and the opportunity to learn about a new condition and the connection to pyroluria.

Thanks for sharing your truly wonderful results here. I am SO SO happy for you – wow – working extensively on repertoire and thinking about getting back into performing!

And I appreciate your willingness to share and help establish the connection between pyroluria and dystonia. As we have recently discussed via email, I feel an article/blog post documenting your symptoms, progress and protocol will be a great way to start sharing this information. Hopefully we can generate some interest from various dystonia organizations/groups/forums and help more musicians find symptom resolution
Trudy

Thank you for all your info on pyroluria. My question is about anemia. Will iron levels improve on the protocal or do I still need to supplement iron? My Dr has me on 1600 b6 and 400 of zinc. I still can not remember my dreams and zinc tally tastes like water. I would like your experience with anemia. Thank you

Hi Marie
Iron levels will not improve. I do hope you are not really on 1600mg b6 and 400mg of zinc. My top of the range is 500mg B6 and 60 mg zinc.

1) zinc – if it’s not tasting much worse then it’s possible your zinc levels are not changing. This could be due to high copper, copper in other supps you’re taking, or low stomach acid, leaky gut, food sensitivities like gluten etc. Mercury can also prevent zinc absorption and evening primrose oil enhances it
2) B6 – you don’t mention if you’re having pleasant dream recall. If yes, you’re good. If not, switching to P5P may be a good idea
Trudy

Hi Trudy. I am a chilean woman (36). Two years ago I graduated from the Health Coach online program at the Institute for Integrative Nutrition. During the program I heard Julia Ross and then I read her book Food and Mood. For my mood problems I tried taking amino acids, 5htp, and gaba, cromium, now foods true balance multi, etc but since I read about pyroluria, I was pretty sure that I had the condition. It made so much sense that all these different problems that I had had a connection between them. But modern medicine looks for everything in isolation. Since then I have been searching for some doctor or practitioner here in Chile that knows about pyroluria but I haven´t found anyone and there is no place where I can test for the condition. I have over 20 points in your questionary and I barely felt the zinc tally in my mouth. I have never recall my dreams, I come from a 5 girl family, I have lot of strechmarks since I was almost a kid although I have always been really skinny, I always have white spots on my nails, I´m never hungry at breakfast, I am an introvert, I have low tolerance to sound, light and stress, I have troulble with my knee, I am always tired, etc, etc. So I want to start your protocol. But I have a 6 months old baby and I am still nursing. Is there any trouble with the doses you suggest and nursing my baby? I am planning to take the b6, zinc, primrose oil, true balance multi. Anything else you suggest?
Also I have a 10 year old boy that maybe has pyroluria. What are the dosage for the kids protocol?
I would love to have a skype consultation with you. Is there any possibility?
Sorry for so many questions. I have been searching for help and guidance with these pyroluria condition for a long time. So know that I found you, I am so happy!

Hi Francisca
I suggest a good Prenatal supplement for my nursing moms. It isn’t quite enough zinc and B6 but may help. I don’t worry with testing any more and just rely on how my clients feel when they do supplement. For kids, it depends on their weight- 60lbs would be half the adult dose.

just writing here to say that i too have battled focal dystonia over the past 8+ years. actually started as writer’s cramp and then worked it’s way into my guitar playing. about 3 years ago i noticed symptoms lessened based on different things i ate and shortly after came across pyroluria. in all questionairs i answer yes to most if not all questions.

anyway, for the past 2 years i’ve been on zinc and b6 and have had vast improvements. for me, the muscle disorders don’t go away without retraining, but the b6 and especially zinc make retraining much more successful. however, sometimes i do hit the jackpot and my hands work almost normal without the efforts of retraining. my dose fluctuates between 25-60 mg zinc and 50-100 mg b6 which i seem to have more trouble taking. i also experimented with methyl b12 but that led to a very painful rash.

the funny thing about all of this is that i feel nowadays that focal dystonia was only the canary in the coal mine for other symptoms that paid little or no attention to because i was only focused on being a musician. as a result of taking supplements most of those other symptoms are much better and i’m soooooo close now to having proper movement in my fingers.

it’s really great to see what you and jay have posted here because it really validates what i’ve been doing. i too believe there are many that can be helped by this.

focal dystonia symptoms vary from person to person. overall, it’s a kind of reflex of unwanted muscle contraction(s) associated to whatever physical task(s) it attaches itself to. in my case, my index finger would curl into my palm tightly while the others would flare outwards. in my other hand, the index would do the opposite and want to stay up. guitar playing became almost impossible as well as typing, buttoning a shirt and picking up small objects. all of this is because my brain lost the clear differentiation of which finger is which. therefore, i’ve had to spend every day for the past 8 years “retraining” the brain with finger exercises. before i treated with supplements, i had small successes only to have them taken away again or get much worse for no “apparent” reason. after supplementing with b6 and especially zinc, the connection to my hand and fingers immediately felt “stronger” and my exercises became more effective with lasting results.

as for the test, i would answer yes to 35 of the questions. of those, i’d say 9 of them have stopped or gotten much better. i have always been prone to introspection but not in a selfish way if that makes sense. psychologically speaking, i can confirm that zinc and b6 have given me a whole new understanding of myself that i could’t see or admit to before. in my “very pyroluric” moments, i interpret the world very personally with this automatic sort of negative slant to things. this is much less now but still happens in times of high copper. but when it does happen every so often, i can recognize it for what it actually is.

Hi Dave
Again, thanks for being willing to share! It’s wonderful to hear that after supplementing with vitamin B6 and especially zinc, the connection to your hand and fingers immediately felt “stronger” and your exercises became more effective with lasting results. I’m learning so much about this condition!

Glad the pyroluric moments are happening less. Keep in mind that high stress situations makes pyroluria worse and you may need more of the nutrients for a short time.

I’m not quite sure what you mean by times of high copper? are you routinely exposed to high copper? and from what source? From the reading I’ve been doing it seems many musicians get copper exposure from brass instruments since they are made from copper/zinc. Do you feel you could get exposure from guitar strings (also made from brass?). Ideally you would want to reduce your exposure but I’m sure you’re aware of this
Trudy

“high copper” is purely conjecture on my part i’m afraid. it’s me, google and a very supportive girlfriend alone in this battle;. not to mention many wonderful people who share their personal experiences in forums like this. when i found out i had focal dystonia, the only options available to me were accepting it as incurable or getting botox injections. neither seemed like the answer for me. i’ve learned a lot since, but unfortunately have no reliable way to test for my mineral and vitamin levels. i did send out a kryptopyrrole test and it came out to a surprisingly low score of (17 corrected and 23 actual) despite the symptoms fitting like a glove. i also used zincatest, got up to 90mg and never got beyond a light chalky taste in the taste test. pairing this with all of the dangers i’ve read about overdosing, i’ve kept doses relatively modest compared to what i’ve read about others. in all of my reading we’ve changed to mostly gluten free and lots of healthy vegetables. but, a lot of these things, even if high in zinc seem equally high in copper. and nuts are really difficult for me to have just a few of. so a lot of times i think i might be getting more copper than my small dose of zinc can fully counteract and the first place i feel it is in my hand. stress does the same and i try to keep that low. ( i also have copper pipes)

so, in short, i’ve really been my own guinea pig with many many setbacks. i don’t have the formula just right as of yet, but i’m on a much more positive direction as a whole compared to where i started.

Dave
I suggest checking out Ann Louise Gittleman’s book “Why Am I Always So Tired” – she does a great job addressing sources of copper. Nuts and seeds are high! Pumpkin seeds are the best – they do have copper but less.

And the urine pyroluria test is often false negative so I like to reply on the questionnaire and response to the supplements
Trudy

First off I want to thank you for helping to bring awareness of pyroluria. I’m pretty sure this is at least part of what has been plaguing my entire family for years! Both my father and sister are disabled with it (or something similar). I see these symptoms in all of us.
Anyway I’ve was already taking zinc citrate (100mg) plus another 10.5mg (zinc citrate) in my multivitamin as well as about 300mg of B6 (combined in my multi, B complex, and straight B6)when I discovered pyroluria. My naturopath put me on these dosages a few weeks back. Still no dream recall but occasionally I would add a couple more of both b6 and zinc just to experiment. I did start getting better dream recall and decreased anxiety but the dose is a little on the high side. It seems I’ve had this problem with other supplements too, like 5-HTP and L-tyrosine. For each of those I require at least DOUBLE the maximum dose to feel anything. My best guess is an absorption problem but I was just wondering your thoughts?

Absorption issues/leaky gut can mean that a person needs higher doses of nutrients and the form can make a difference too. Also competing nutrients could be a factor – such as copper in a multi affecting zinc absorption. I like the Optizinc form (zinc monomethionine). The GLA helps absorption and so does good stomach acid. For B6, the active form P5P may be needed instead of B6/pyridoxine.

I’m just writing you back to share information because it helps all of us.
I’ve had a hard time absorbing zinc as the zinc tally test is still negative despite trying different forms of zinc (haven’t tried the opti-zinc yet). A hair analysis test has revealed heavy metal toxicity – lots of lead, aluminum, cadmium and tungsten.
That could explain a few things!

Thanks for sharing Mike and yes heavy metals can block zinc absorption. I would suggest trying opti-zinc too. And check the hair analysis for high copper too. You can also have hidden high copper i.e. it’s high but doesn’t show up on the test.

After my own experience, I still say an experience akin to rebirth as a musician and also as a person, this was the reason for me to post on this blog – to help get this out to musicians who are victims of dystonia and inadequate medical treatment.

From what you write, I should probably up the zinc (right now 40 mg) a bit and lower the B6(900 mg at present), because I am about 90% there but want 100%.

A big Thank You to you, Trudy, for your open-mindedness towards less familiar conditions and your willingness to dig into them, for continued advice and support!

I recently listened to your interview with Corey Schuler on the Anxiety Summit. You mentioned your work with vitamin B6. I am hoping you can point me in the right direction. I have elevated levels of B6 (standard blood test). I do not supplement. I am dealing with depression, anxiety, irregular menses, hypothyroidism and food sensitivities. I cannot find any information as to why my B6 would be high (malabsorption?). My ND doesn’t seem concerned but the more I read about B6 and it’s role in all the above, the more I wonder if my high B6 needs to be addressed. Can you offer any recommended reading or resources? Thank you. I have enjoyed the summit very much! ps. I took the pyroluria questionnaire (above) and scored a 16.

Easier to list the very few #’s on the list that I didn’t check; 4, 7, 8, 10, 11, 15, 16, 23, 27, 30, 33-37, 39, 41, 42.
I supplement with zinc, using the test/protocol, but I am experiencing constipation and that is the only supplement I’ve added recently.

I understand B6 stimulates peristalsis, so the two supplements in combination might avert the tendency for constipation.
I will need to add B6 to my supplementation.

Wow this is mind blowing. I can relate to most of the common and uncommon characteristics. I have had early childhood trauma in a hell daycare that had left me with anxiety and panic attacks for the rest of my life thereafter. I also have a gene in the family where we all go grey in late teens and now at 33 my hair is all white. I have always been very shy, intimidated, gullible, and sensitive. I thought thats just how things are. Until i did a detox and my body couldn’t handle it (with copper gold silver) and I had a very bad reaction to it with tremors and panic and the whole works that also has onset insomnia after. Funny you mention you make sure your supplemets don’t have copper! Since then, my naturopath has struggled to find the optimum formula to detox me and it seems kids doses work best with me as I react so easily. He said in his 30 yrs he has not had one patient with my reaction. It made me feel pretty lonely but the kids detox dosages for copper gold silver along with optimal liver and kidney support supplements, it worked fine. In any case…I am on a steep learning curve that biochemistry actually DOES affect one psychologically and you’re not just “broken” as I thought I was.

Hearing you speak about all this on the Natural Remedies summit gave me a HUGE “aha moment”. Thank you!

Hi Ana Maria
So pleased to give you a HUGE “aha moment”! Yes! biochemistry actually DOES affect one psychologically and you’re not just “broken”. Glad to hear you’re doing better on lower doses and have a naturopath supporting you. Thanks for sharing and here’s to more aha moments
Trudy

Thank you so much for making this information public. From the common symptoms list I checked off 22. Total of 28 with the uncommon symptoms. I know I’ve have anxiety and depression from a very young age but was diagnosed when I was 17. The social anxiety is what bothers me the most. I can sometimes mask the anxiety and depression but the social anxiety makes the other 2 even worse. I feel like I cant be myself in most situation and I find myself getting more and more anti social and have to force myself to do things outside of home watching tv. The social anxiety has gotten better with the years but the anti social behavior is getting worse. I just was weaned off zoloft after taking it for 2 1/2 years. I’m 28 now but have been on and off meds since 17. I stopped bc I really want to take another approach without the chemicals. They helped but not that much. I will be ordering your book after this post but would like to know exactly how you determine how much of which vitamin to take. And if they should be taken once a day, twice a day, with or without food, etc. I read some of the comments and saw some make comments about how fish oil is bad to take if you have pyroluria. I started taking fish oil not long ago in attempt to improve my memory and concentration, which is terrible. I think I may have some form of ADD. Is there another alternative that will help treat memory and concentration issues? I am also taking doctors choice magnesium 200 mg elemental and nature’s way alive B complex + C. Should I continue to take these and add the zinc and B6? Is a multivitamin necessary? I just bought GNC brand 100mg B6 and 50mg zinc. Do you have suggestions? Sorry for all the questions I just feel like there might be some hope for me after all and I’m excited to start trying these supplements but want to make sure I’m doing it correctly.

Hi Marie
I’m glad you’re excited and hopeful but try not to get too overwhelmed! I use this questionnaire and others (plus testing) to help figure all of this out. You’ll see the general guidelines here on this post – the comments have a wealth of information. Some people do ok on fish oil and some don’t need it – the ideal is to do a fatty acid test to find out. Concentration issues can have many causes: a need for omega-3s, sugar, gluten, low zinc etc.
I can’t give you specifics on what you should take but typically a multi, magnesium, B complex and C are very useful too.
I will say make sure the zinc and multi does not have copper.

If my B6 was low then why does it test high? malabsorption? I have elevated levels of B6 even though I do not supplement. I am dealing with depression, anxiety, irregular menses, hypothyroidism and food sensitivities. I cannot find any information as to why my B6 would be high? (especially since I have signs of low B6.

I have almost all the symptoms of pyroluria you’ve listed above but i live in Finland and i couldn’t find here a place where they would test for this condition. So i started yesterday the treatment by myself and took 400 mg of b6 in two 200 mg tablets and 30mg of zinc. In the evening i got horrible tingling sensation in my arms and feet and a little numbness and i still have it in the next morning. Then i read about the side- effects of too much b6 that it can cause nerve damage and got a little bit scared. Could this mean that i don’t have a pyroluria because i got such a bad side- effects.
I’m still looking for a cure for my lifelong anxiety. I’m now 30 years old woman. I had also a severe hyperemesis gravidarum during my pregnancy and i’m looking for answers why i had it. Pyroluria makes sense to me because i’ve had those kind of symptoms all my life. I’m dreaming to have a hg free pregnancy next time if we try again.
Thank you for your wonderful page!

Hi Elisa
Too much vitamin B6 can cause tingling/peripheral neuropathy which reverses when you stop. I start my clients on 100mg vitamin B6 and build up slowly each week. Some people do better on P5P – I start my clients on 25mg. And yes hyperemesis gravidarum may be related to low vitamin B6.

There are Dutch labs that offer pyroluria testing if you do want to test.
So glad you enjoyed my page!
Trudy

PS for my other blog readers, hyperemesis gravidarum is a complication of pregnancy characterized by intractable nausea, vomiting, and dehydration

Hi Trudy – I have bought L-Optizinc 30 mg; but it was with 0.3 mg of Copper – but you had mentioned to get it without Copper. Any comments?

Also, I tried Tryptophan 500 mg – but had an adverse reaction – so based on what I have heard you say, that must mean I don’t need it (right now anyway), and that my serotonin levels are fine right now. Is this correct?

I tried Gaba – and realized that I did need it though.

Thank you for all of the work you do and looking forward to hearing back from you 🙂 Melanie

First off, thanks so much for all the valuable info you share with the world, I know I appreciate it!

So, I’m pretty sure I’m pyroluric, and I’m waiting on test results. I decided to try out the the pyroluria protocol in the meantime from Depression-Free Naturally, and I’m having the following symptoms – insomnia, more anxiety/panic during the day, some nausea, migraines.

Could this be related to copper elimination and excitotoxicity? How long must I endure this pain until I start to see some relief (is there an average)?

I also get very sneezy/stuffy on regular B6 as I have the CBS c699 snp mutation (along with MTHFR, MTRR, COMT, etc.) CBS causes more sulfur breakdown products, ammonia production, which I think slows detox.

Hi, Trudy! Thank you so much for all your valuable information here. I have your book too and have found it a real eye-opener! I score high on the Pyroluria questionnaire, but you say you don’t typically test for Pyroluria. Would it make a difference to my family if I had a definite diagnosis? I have 6 daughters, and yes, people tell me they are remarkably similar in looks (though I see their individuality mostly). I also have two sons, so not an all-girl family. I see many of the Pyroluria symptoms in my mother and her mother too. As it can be genetic, this is the main reason I was considering testing myself – my daughters. How would it impact them if I tested positive for Pyroluria? What would I do differently for them? Would supplementation save them from needless years of struggle? That’s what I’m considering. I have already ordered the liquid zinc to do that test. I am happy to take zinc and Vit B6 for myself, but it’s really wondering ‘what about my children’ that has me looking in to testing for myself initially. Could you comment on that, please? Thank you so much for your time. Shael.

Hi Shael
You’re welcome – glad my book is an eye-opener! The reason I don’t test is because you may get a false-negative when you could still benefit from the supps AND because it’s so simple to get on the supps and see if you feel better. If you do do better and your children also have symptoms of pyroluria (nightmares is a classic one with kids) and then you can have them try lower amounts of the supps right away. There is no place for needless years of struggle for anyone 🙂
Trudy

Thank you, Trudy. I have a nine-year old daughter who displays a number of Pyroluria sypmtoms, including being plagued by nightmares. I’m so glad you mentioned that, because we’ve tried so many things to try and help her deal with the nightmares. What dosage on the supplements do you recommend for her age group? Thank you. Shael.

I have been reading your book (The anti-anxiety food solution) and wondered if you would mind answering a question for me? I believe I have Pyroluria (I agreed with 31 of the statements in the Pyroluria Questionnaire). I have arranged to see an integrative GP in Australia for Pyroluria testing, but I can’t get an appointment for a few more weeks. In the meantime, I am seeing a renal specialist because I consistently have high protein levels in my urine (however my blood tests and ultrasound shows no kidney problems).

So my question is, could Pyroluria cause protein to show up in urine tests? (i.e do kryptopyrroles, zinc or vitamin B6 show up as protein?).

By way of background, I am a 35 year old woman. I had my second child 8 months ago. I have been suffering from postnatal anxiety since the last trimester of my pregnancy (insomnia, panic attacks and anxiety). I have been on zoloft for 4 months and am now sleeping better and less anxious, but still not feeling 100%. I have been taking zinc fix for 2 months, but the zinc taste test still tastes like water. Thanks for your advice, Bridgette.

As far as I am aware, there is no connection between pyroluria and protein in the urine. Here is some info on elevated protein in the urine: “Protein in the urine is a warning sign. It may indicate kidney damage or disease or it may be a transient elevation due to an infection, medication, vigorous exercise, or emotional or physical stress. In some people, it may be present during the day and absent at night when the person is lying down (orthostatic proteinuria).” (http://labtestsonline.org/understanding/analytes/urine-protein/tab/test/).

Zinc can be very beneficial. I’m not sure what zinc fix is so can’t comment on why the zinc sulfate still tastes like water. Can you please share who much zinc and the form? and if you are getting any copper in any of your supplements?

Thanks Trudy. I will certainly have a look at the links you provided. Zinc Fix includes 62mg of Zinc sulfate monohydrate (equiv. elemental zinc of 23mg). Apart from this I have only been taking magnesium and probiotics (no cooper in them). The proteinuria started during the last trimester of pregnancy, and I didn’t start zoloft until 4 months after my sons birth. Also, I stopped breastfeeding shortly after starting Zoloft. The renal specialist has suggested a kidney biopsy if my condition doesn’t improve by March. Also, my mother has Lupus and the renal specialist mentioned I could have that, even though my blood tests were negative (ANCA and ENA negative). Thanks again for your advice. Bridgette

Dear Trudy,
thank you so much for opening my eyes. i have been to dozens of doctors over the years trying to get treatment for my fatigue bad skin and a whole host of other complaints including anxiety. none of the drugs they gave me ever worked mainly do to intolerance. i cant take anything with out horbal side effects i have 32 of the 40 symptoms listed. my doctor thinks i’m a hypochondriac. have you noted a resistance in other healthcare professionals?. regarding this. its a shame the only reason im not on prozac is that i cant tolerate it. i would like to find a new Doctor in Reno were i live any advice thanks. Paul

Trudy, have you heard of B6 and/or zinc causing people to become ill due to detoxification? Or can it signify too large of a dose? I stopped after just 2 weeks on a combo pill of zinc picolinate 25mg, vit B6 pyridoxine 50mg and P-5-P 25mg because my anxiety skyrocketed and I began having stomach/epigastric/chest pain, a pounding heart, clumps of hair falling out, weight loss, and a tingling tongue with a metallic taste. After a couple days off the pills, the symptoms resolved. Any insight would be appreciated.

Hi K
These are not even very high doses: 25mg zinc, 50mg vitamin B6 and 25mg P5P and yet this is a very severe reaction. I have not heard of anyone having a reaction like this but anything is possible. I would work with your doctor and get copper and ceruloplasmin levels tested as these could be related to copper toxicity. I’d also look at the quality of the products and possibly contamination.
Trudy

Trudy, thank you so much for your work with pyroluria. I have nearly ALL of the symptoms, as do many members of my family! My uncle on my mother’s side was schizophrenic, and all of the siblings in that family had trouble with alcoholism and anxiety. There were five look alike sisters in my mother’s family as well. I’m supplementing as you’ve suggested and looking forward to a brighter future! 🙂

Hi Trudi,
thanks for sharing this info. I have a feeling I have pyroluria and should get myself tested but I am concerned that my 6 year old daughter also has it. She often has nightmares, is shy in groups. has white spots on nails, seems to get stressed out easily etc… Despite always being fed an organic whole foods home cooked from scratch diet.
Could I just give her some supplements at her age or is it better to test her first.

I have two younger sisters, no brothers. One sister has two girls, and the other sister has one girl – no boys. (I don’t have children.) How does this scenario relate to anxiety disorder, which I have had all my life? I am now a senior citizen. Very curious about this! Thank you.

Very interesting as I am from a nearly all girl family. I did hear my mother did miscarry. I only have 1 sister. I myself have only girls and 1 miscarriage (sex was not identified)…
I wonder if that is because boys in the womb would need more zinc than girls?… I ended up with huge amounts of stretch marks from my pregnancies. Now I can see that this could have been zinc deficiency. Frustrating that doctors/midwives don’t give any help seeing deficiency signs!

Hi Trudy,
This information is awesome, I have previously or currently ticked off all of these symptoms. I was diagnosed with Adrenal Fatigue at the start of 2014. I was extremely withdrawn for almost the whole year until my new FMD put me on a bioactive form of Zinc a month ago. I noticed a change straight away. I have started P5P today & hope to notice more positive changed in my anxiety so I can spend more time in group situations. How long does this normally take to kick in? Is this a condition we will have all our lives?
Thanks again!

Hi Alexandra
It’s wonderful to hear you so quickly noticed a change with the zinc. The pyroluria protocol typically takes a week or so before you start to see improvements (assuming you have the right combo and amounts of nutrients). And yes, if you have pyroluria you do need to supplement always. Do let us know how you do going forward
Trudy

Hi Trudy,
I relate to most of these signs (as well as to the signs of introversion you mention in another post), and they have become extreme over the past 3-4 years. However I worry about B6 – I have been warned that it can cause peripheral neuropathy. I have severe autoimmune polyneuropathy in my hands and feet, so I have been told to not supplement with it.
I don’t see any cautions about B6 in your work. Do you have any thoughts on this?

Hi Fay
Yes too much vitamin B6 can cause peripheral neuropathy – which reverses when it is stopped. I would follow the recommendations from the doctor (I assume) who said not to supplement with it or get some testing done to find out if you are low in vitamin B6. I typically don’t do pyroluria testing but for you this could be good + a Spectracell test and GGT blood test. Also, do you remember your dreams as this a is big clue for low B6.

Also, addressing the autoimmune polyneuropathy may allow you to take vitamin B6 if you do need it.
Trudy

Thanks for informative blog. I first saw story in NaturalNews last week. After realizing I had nearly all the symptoms, I e-mailed the story to my Dr. and will get tested next week. I’m also positive for 1 gene mutation of MTHFR and frequently feel tired, get fatigued more quickly and easily than average person. So I feel a little apprehensive of not taking any supplements 1 week before the test but its for a good cause. With so many of the symptoms, I’m sure I must be positive but its good to test to see how deficient you really are. Will probably have kids tested as well since they tend to have some ADHD symptoms and 1 child has inherited my MTHFR gene mutation 🙁

Hi Trudy.. My name is Pixi…..I live in Dubbo Australia. I have suffered with severe anxiety and depression since I was sixteen, altthough I do recall being an ADHD type child that would get anxious when put in the spotlight.I also lived with domestic violence , my father was an alcoholic and I being the oldest became my families protector, much to my detriment.
My one gigantic wish is to finally figure out what is causing it.I have made many changes in my lifestyle, I follow a very strict paleo diet.I take many supplements, many to help try to rectify my anxious mind and others because last year I had breast cancer and now follow an anti-cancer natural regime.I have tried so many things over the years and while exercise and the many other things do help, nothing seems to be lasting.It,s the debilitating panicky feeling that just doesn,t go away. I am now 51yrs of age and it would be so nice to be able to enjoy life for once without this debilitating condition. I did both of the series of questions for pyroluria and these are my results.
The first 23 questions:2,3,5,6,8,11,14,15,16,17,18,19,20,23
the pyroluria questions:1,2,3,4,10,12,13,14,19,21,24,25,26,28,29,32,33,36,38,39,42
I am so hoping you can give me some advice, or even if I might be able to liaise with you in some way to figure out a regime that might be helpful.
Hoping to hear from you with anticipation
Pixi Vincent

Hi Trudy…I just came across this condition of Pyroluria this weekend. I was suspecting high copper as my zinc levels with the taste test are still undetected even when I was taking 50 mg. I answered 15 of the first set of questions and 2-3 in the bottom section. My main symptoms are creaky joints in the morning, difficulty with sleep at times, adrenal issues and Hashimoto’s, leaky gut and malabsorption issues, digestive issues with low HCI, inflammation, bacteria and parasites show under a microscope when looking at my blood. I have had anxiety and fear most of my life though it is better. I take a lot of Standard Process supplements but as you may know they are mostly glandular in nature but otherwise food based. Just not sure the B vitamin or zinc would be strong enough for what I have read here. I was going to do a urine test online for Pyroluria but from what you have written here it does not really seem necessary. Thanks so much for your thoughts.

Hi Cindy
You are correct, the urine test may be a false negative. And these supplements may not be enough for the pyroluria. I’m sure you’re aware that you do also need to address the gut issues and supporting the adrenals will help in this area too.
Trudy

So glad you say that Trudy! My daughter has so many of the signs and symptoms but after her pyrrole test was negative I did not give her the Zinc B6 or Evening primrose oil!!
Should have known there could be false negatives but you are the only one who mention it…
bless you Trudy!!

Hi Karen
Yes false negatives are way too common and too many folks find out the hard way and then come around and supplement and see amazing results.

I like to start folks on 30mg zinc and at least 100mg B6/pyridoxine and/or 50mg P5P. The EPO also helps zinc absorption. And I like to use the zinc challenge to help assess zinc deficiency and progress

Please let me know her score and who you tested her with – I’m compiling informal data. Oh and her age.
Thanks
Trudy

I have lived with every single symptom listed, although I have never taken a liquid zinc supplement and I’m not aware if I am truly gluten intolerant.. I do note that, I have dealt with these symptoms, many of them so intense, that they made up who I was since I was a child. Although, more recently the less common symptoms have taken over my life. I had a period of time where I went on a whole food, and raw diet starting in 2010(about a year after a long fast that I feel saved my life at the time, although I only did it as a way to “rebel”, because I could not stand the way I felt and at 185lbs on a 105-120lb frame, with all my symptoms so intense and all alone at 16 with no food anyway, Im sure it can be understood). Where am I going? Okay, so after starting a whole food diet that included lots of bananas and real food that I never ate growing up, many of my symptoms started to get better, my perceptions, and my ability to interact with people, was better, in fact, it existed, but for the past several years I have been in another world again. It started in 2011-2012, I have some ideas of the changes that occurred in my life to lead me to the paths I’ve taken. Not getting into too much detail of the different changes, loads of stress, resulting infections, and in 2013 I got a mosquito viral infection, that caused me to “go back inside myself”, like I couldn’t speak to anyone, and my executive functions, my ability to decide a course of action and follow through with it, were shot, at first, I couldn’t reckon how I would get dressed because even that was more deciding then my brain could handle while at the same time having an obsession for perfection was also stopping me from making a choice. This same inability to make choices, kept me stark alone, I couldn’t even communicate with the 2 close people in my life, it was like I was stuck in a world inside myself (constantly cold, depressed and in a damp dark basement). My head felt like there was so much pressure in it, that I was being pulled down by gravity, I couldn’t get out of my bed, and I couldn’t respond to my low blood sugar, which always caused an adrenal response that made everything so much worse. I have not been able to fully get rid of this daily headache that I have had since, or find balance in my eating and blood sugar, and I have frequent panic attacks where I don’t know what to do, and it causes me to binge eat, and my perception gets so confused, I forget that I really needed the food, and since it makes me feel nauseous and sick to eat, I re-developed bulimia that I hadn’t dealt with since I was 13. I never went to the doctor after, as if you understand where my mind was, I’m sure you could imagine, so I don’t know how to talk about this with people. I have done a large amount of reading throughout the years, in the time between “the fog”. But my ability to take action where need be, is diminished by this cycle. And I can never find enough balance to talk to anyone about this as a whole. I am in the same boat as many drug addicts that I know, and I am not addicted to drugs, but I see the correlation, in how we feel, and how we react to these feelings, especially when I look at my older sister, my aunt and cousins who are all of a similar age to each other. So anyway, I actually have read about the connections of many of these sypmtoms to deficiencies, candida, gut flora imbalance, improper diet, and orthomolecular therapy was one of the first things that opened my eyes, turned on my consciousness again, but I let things fall away from me, when physical and emotional stress take over. (I haven’t mentioned that a large part of my stress ties in with a boy friend that has a lot of his own “stuff”, and also puts it onto me, while never understanding himself, or me) I also can’t eat when I’m in panic mode (fight or flight) and so my brain is really foggy, I know I have severe candida, and underlying imbalance that I really need to address but honestly I am so stuck inside myself, inside my subconscious mind, and my small little life that is too much for me to handle. I have been trying so hard. And some days, I’m able to find new information that really gets me on the track again, finding my way out, such as today, where I decided to read about orthomolecular medicine again, and this information about Pyrroles and their buildup in the blood causing Pyroluria, makes a great deal of sense to me, so many connections to other things I have read, like it’s coming into focus for me. Later today, after I feel better (hopefully) from my morning headache, pains and brain fog, I will continue on my path, of learning, small changes, and slowly regenerating what only I know I have lost. Thank you for being a part of that. It would be nice to talk to you, the writer of this blog, or others, any advice would be nice from people who have even a vague understanding of where I am coming from, because I feel that anyone I interact with, does not. Though, I won’t sit back and wait for that. I hope someday very soon that I might find it in me to make an appointment and follow through with leaving my house and going to it, and with that, find the ability to speak(and actually be able to get as much information out of this lock-box as I can) to a doctor with a holistic view point. But for now, I will take ease with knowing that I have the ability to get better. One step outside of my mind- and in the direction of change, at a time, I will find my health. To take back? Or to Submit Comment, well I’m no better off if I take back, so here it goes…..

Kleigh
You do have a lot going on and I’m so sorry to hear how long you’ve been suffering with this. I’m so pleased you found my blog and have discovered the nutritional /orthomolecular approach – it’s powerful! I do think you’d be well served to work with someone one-on-one but to start I’d suggest focusing on real whole food with quality animal protein and keeping your blood sugar stable. And so many people see so much improvement when they use the pyroluria nutrients.

You may need to be assessed for adrenal issues, food sensitivities, neurotransmitter imbalances, low iron and dysbiosis.
Trudy

Hi Kleigh, I don’t know where you live, I am in Australia, from reading you it looks like your gut needs healing, as Trudy said starting with the pyrroluria treatment should help lower stress levels to start with, a bad virus can trigger liver distress and subsequently many enzymes may be depleted so you start developing weird symptoms such as brain fog, fibromyalgia or chronic fatigue type symptoms.
From my experience as a fibromyalgia sufferer, anxiety is often a symptom along with pain and sleeping issues, etc, look into a low oxalate diet along with Pyrole treatment, if you have a NeurOptimal trainer near you, it would also help to get out of the emotional rut…NeurOptimal is a gentle, holistic form of brain training…it just helps your brain to make new connections/ neural pathways, and always helps other treatments work better. it simply enhances our brain’s potential at changing its old patterns.
I hope you find someone near you that can help you with the orthomolecular approach too, it is the future of mental health assessment and treatments.
Good luck!! Karen

Hi, thank you so much for the amazing discussion and information sharing you’ve so generously hosted here. I went through the symptom lists and I have 30 between the two. One symptom that I didn’t see, but I’ve read about in other places is the early graying of hair. I was 75% white by the time I was 30, and 95% by the time I was 35. It was pretty weird and disappointing especially since I had really gorgeous red hair to start with. :(. I wonder if you’ve seen this symptom before. Thank you for all the help you’ve provided here!
Bonnie

I have lived with shyness most of my life and after a schizophrenic nervous breakdown became withdrawn and my social anxiety skyrocketed. I had been subjected to plenty of stigma and vilification from people to the point where it disabled me and I just totally had nothing to do with anybody. I would not pick up the phone, leave the house or attend social events or be anywhere in public. My whole family lineage is full of alcoholism and after ticking nearly all the things on the questionnaire I decided it may have been pyroluria. My relinquished sister who was adopted by another family has family photos of her as a teenager that looked exactly the same as me. I had read by a top psychiatrist in Canada who practiced orthomolecular medicine that he treated most of his clients for this disorder and had excellent results. I started on the zinc and B6 and nearly all my anxiety has gone. I talk to people on the phone and am less reluctant to shy away. This is a major milestone for me as I have felt the heavy burden of this disorder plaguing my every waking moment in readiness to go into retreat mode. This illness was literally ruling my life, overtaking my emotional responses and stopping me from doing the things I wanted. It was literally as if I was consigned to being a recluse with no contact with the outside world. I felt as if there was no hope and extended family penalising me with a “neurotic label” because I could no longer interract with people. I sought help from a psychologist years ago and read books on social anxiety. I went into treatment with the genuine intention of being honest with myself and getting the situation remedied but the success rate of that therapy was virtually zero and I wound up feeling more hopeless and disengaged from the world. If there is people out there who are typically withdrawn and have markers of mental illness you may have pyroluria. It features disproportionately higher in the psychiatric community. If it wasn’t for Trudy I don’t know what I would have done other than becomming even more emotionally crippled and unable to face life with more strength. I am looking forward to the future with more hope and being more empowered after what has occured in my life. Its sad to say but its true that our attitudes to the mentally ill are poor and we deserve to be free of stigmatisation through education of the general public. But like most types of difference there will always be discrimination, but taking these supplements has given me more courage to face people and to bear the daily impositions I experience. Thank-you 🙂

Tara
I am so pleased with your wonderful results on the pyroluria protocol. Don’t forget to look into Evening Primrose oil too – it enhances zinc absorption and is often needed. I’m sure you’re also aware that pyroluria and addictions/alcoholism are often seen together so this ties back to your family history.

Thanks so much for sharing your heart-felt and very inspiring journey here. I know this will give others much hope! Also, your comments about stigma are so important and hopefully will ring true with some readers.
Trudy

If someone has pyroluria and takes vitamin B6 and zinc (in sufficient quantities for regular dream recall etc.), but the person doesn’t also clean up their diet 100% or get enough sleep, can that sort of “cancel out” the benefits of the supplements—so that the person experiences very little (if any) improvement?

I’m currently gluten free, but not totally grain and dairy free. There’s no question I’m reactive to dairy, and strongly suspect to grains too. Could the grain and dairy be enough to keep me stressed and anxious, no matter what else I might be doing right?

Thank you Trudy, I knew what your answer would be before asking but the idea of giving up dairy and grains entirely (even ghee and rice) was painful so I was in a bit of denial. Years ago I turned vegan for awhile and remember the shock when my nose wasn’t blocked anymore, and it was actually possible to fall asleep without sitting up to breathe. Before that I’d lived on milk and cereal so it seemed obvious there was a connection.

Anyway, after reading your post I changed to strict paleo and now (after a few painful days) there’s an almost surreal feeling of physical/emotional calm that’s come over me. I know it may get worse again before it gets better, but it’s encouraging to say the least.

Thank you, Trudy! This is such a generous labor of love, and I am a beneficiary already. I got 29 on the questionnaire. I have lyme disease.

Two questions:
What causes the stitch in the left side? I’ve had that for 10 years almost all the time, and nobody has ever been able to tell me what it was. It disappeared with my first dose of zinc.

What caught my attention is the fact that this condition causes an inability to make GABA. I also started GABA and had a very strong healing crisis reaction to it. If I take the B6, zinc and EPO, will my body be able to process amino acids better eventually, or is GABA something I need to take indefinitely, too?

Thank you so much for this site. I bought the book, and I’m looking forward to learning more. I’ve already shared this page with several people.

I’m curious if you had also started taking vitamin B6 when you noticed the stitch disappear? My understanding is that it has to do with the spleen and vitamin B6 is what helps to alleviate it.

I’m not sure what you mean by a “a very strong healing crisis reaction” but it doesn’t sound good. You don’t ever want to take more than you need and it may be that you used too much. With GABA the form also makes a big difference. If you’d like to share more details I can offer more input: form/brand, how much, how often, swallowed or opened/sublingual?
Trudy

I had bioenergy testing done in 2006 which hi-lited krytopyrrole, that’s when I googled it. Only now am I realizing the seriousness of it, occasionally see a ND, and test myself with dosages because it seems to be trial for each individual. Taking 25mg zinc gluconate or other at times, back on 500mg b6, hit and miss with Omega 3. Also dealing with adrenal weakness and taking 4 caps of Can Prev Adrenal Pro, 500mg B5, now 3 – 1/4 tsp (3000mg) of Ascorbic Acid in smoothie. If I do not get at least 7 hours of sleep of have horrific symptoms: breathing goes wonky (anxious feeling), eyes feel sticky, and brain feeling like it is being drained (not enough fuel). How can 1 or 2 hours make so much difference? Is dopamine the issue there? Any ideas/suggestions? I do take 11 drop of Melissa Balm if I wake at 5 am (2 hrs earlier than desired). I have done much healing on a emotional level and deal with things as they present. I feel happy in my heart, by lacking motivation especially when sleep deficient. All neurotransmitters were out of whack in 2006.

Chrissy
I would focus on getting that extra sleep – your body is sending you a message. I’d suggest looking into low serotonin/low GABA now, especially since you say they were out of whack in 2006. Do the amino acid questionnaire and trials (better than urinary neurotransmitter testing)
Trudy

part 2. I have decided to cut out oats and brown rice pasta and nuts and seeds, I have a hunch they are contributing to poor elimination, and will commit to 10 pm bedtime. I have a sensitive nervous system and I am an empath, yet with adequate sleep I am able to feel grounded and continually moving toward being in a good heart space. Still looking for any ideas/suggestions/comments. Your sharing is a tremendous gift. Blessings to you.

Part 3 Also dealing with dry patches and white patches on arms, and have been aware the liver is challenged as well. Had several years of high stress and much emotional processing, mostly behind me except for the physical healing now. I take apple cider vinegar 2 tblsp in water, dandelion tea recently started, and castor packs 3 days/wk. Also would like to have suggestions regarding this matter. Thank you kindly

Hi Trudy,
I have enjoyed this post and read every single comment for more info! Here are a few questions/comments I did not see answered.
– We just completed urinary pyrrole testing through pyroluriatesting.com Their instructions for collection, storage and shipping of the urine are very strict and precise, and they use a lab that calibrates the test in a certain way. They are recommended by Drs. Walsh and Menseh, who are pioneers in this field (as I am sure you know). I imagine those who want to get tested would find good help here. My 5 year old son’s results were 25.
-My husband has not been tested but has many of the symptoms (some very severely) and is feeling better on the protocol. However, he is COMPLETELY extroverted. (My son is often extroverted too) He may be the minority but thinking of pyroluria as a social anxiety disorder rather than a generalized anxiety disorder might stop some people from investigating further.
– My daughter, who has not yet been tested, cannot abide the taste of the powdered zinc citrate. Is a reaction to this of the same significance as the zinc challenge test? Or do you know a zinc supplement that is better tasting for kids?
– What are your dietary recommendations for a pyroluric? I have noted obviously whole foods, good quality animal protein and careful of nut intake. Anything else specific?
– Can you explain the connection between pyroluria and thyroid problems?
– Do you have any specific labs you recommend for a good look at gut function/parasites/infections?
Thank you very much Trudy!

Hi Michelle
I don’t ever do the pyroluria testing due to false negatives (even with this lab) but a positive that correlates with symptoms is good, especially when the supplements lead to symptom resolution.

Thanks for the feedback on your husband and son and extroversion. They are the first pyrolurics I’ve heard of who are.

I don’t have experience with the powdered zinc citrate and it’s taste – I’d suspect any unflavored form of powered zinc would taste bad if your zinc status in good. A good test would be to buy the zinc sulfate and see if her reaction is similar. I don’t have a rec for a child’s zinc.

This is really fascinating in regards to my daughter. She has so very many of the items listed. She is 12 and 108 pounds. If I were to start her on the protocol you recommended, would it be the same for someone her age and size?

Thank you so much for sharing this information.
I have learned so much! Is it true that
increasing zinc can stir up heavy metals?
I have read that something to chelate is necessary, to
usher the metals out of the body so they will
not recirculate. Is this true?
Can a person with high histamine also
benefit from niacinmide?
Do you find most of your clients can
tolerate the P5P form of B6?

Hello Trudy! I was wondering what you think about copper “dumping” when you take zinc. I have been told that I need to be careful when taking zinc as it may release too much copper into the bloodstream causing severe emotional reactions, as well as being very hard on your liver and adrenals. Do you have any suggestions about this? I tried to take the zinc and felt terrible.

Hi Lisa
Yes copper dumping can be an issue with some people. I don’t see it very often but if you feel terrible on any supplement you’d want to back down. You don’t mention the form of zinc and how much or how it made you feel but I can say I typically start my clients on 30mg zinc and find the opti-zinc (zinc monomethionine) to be well tolerated.
Trudy

Dear Trudy,
Thanks so much for your site! I was tested for pyroluria 3 months ago and have been on supplements from my doctor’s script with the compounding chemist. I originally went to the doctor as I have insomnia. My sleep improved for the first 2 weeks but then reverted. I am still the same – awful insomnia. I have been reading your site and it seems tryptophan might be worth a try? What brand and dosage do you think is OK? I never wanted to think I had depression (my dad has awful depression and I found that so hard growing up), but now I think I have always had depression. I was diagnosed with PMS in my late 20s and have used natural progesterone for years now (I am 50 now). Have always been anxious, fearful, but extroverted as a child and turning into an introvert as a teenager (also had a big stress event when I was 15), also a late developer. I also had ovarian cysts when I was 21. And I only managed to have 1 child – I miscarried otherwise.

Do you know if rosacea is connected to pyroluria? I have rosacea. Have just found out that that is what it is (my face).

My doctor has not made recommendations about diet. I was going to try the Essylstyn diet. But being vegan is not a good diet? Esselstyn says all meat and dairy products harm our heart. Bill Clinton follows his diet.
I also groan at the thought of going gluten free. Do I really have to do this? (On the supplements my gut/toilet habits seem better). And I love a coffee in the morning…also apples (copper) and chocolate. Do I really have to cut these things out? What should I be eating?
I have a friend who stopped taking the supplements because she said they made her too depressed. But from reading your site perhaps she was ‘dumping copper’? I have had bad bouts of depression too but I am so desperate to get better generally that I have stuck with them and for now the depression has lifted. I stopped taking evening primrose oil because of the depression and felt better afterwards. But from your site it looks as if I should take EPO (my doc recommended it). Also I must ask my doctor about histamine….
In my 20s the GP/naturopath who told me I had PMS & gave me natural progesterone also said I was not absorbing my food, but she didn’t know why. This was over 20 yrs ago. Then later a naturopath teated me and said I had an autoimmune problem, but he couldn’t tell me what it was. Do you think I should get a test for autoimmune problems? Maybe in 2015 they have better testing.
I have had insomnia for 8 years now. I wish it would go.
I will see my doctor in 2 weeks for a follow up. It’s always a long wait as he is very popular & only works a few days per week.
Thank you. Sorry this is so long.
Lin
P.S I think I do feel stronger on the supplements. I’ve had times of feeling relaxed, but it’s been a rocky ride with ups & downs. My pyrroles result was: HPL (ug/dL 121.1).

Hello again, I was also wondering what you think about negative reactions to Tryptophan. I have not had very much luck with it. I had watched Jill Carnahan’s video on the depression sessions when she talked about the IDO enzyme being activated which will cause the tryptophan to go down the wrong pathway–turning it into an excitotoxin.. Do you have any suggestions?

Hi Lisa
There are a few things to consider. Some people do better on tryptophan and some do better on 5-HTP. If you don’t have low serotonin then neither will work and/or can cause an adverse reaction. The brand is key – I only use Lidtke. And the amount is key – you may do well on the starting dose of 500mg or may need more. You may also only need a very small amount like 1/10th or even 1/20th of a 500mg capsule.

You say: “I have not had very much luck with it” – would you mind sharing what reaction you had? and how much did you use? and what brand did you use?

I have not yet heard Jill Carnahan’s interview but will say that the tryptophan/IDO/quinolinic acid concerns are somewhat contraversial and it’s not something that I have seen issues with. But that being said, we are all unique and you could react badly to anything and it’s possible that this is a reason.
Trudy

I did check positive for 18 (15 of most common) of your signs and symptoms you have listed. So I started taking B vitamin complex and Zinc for like a week and an half! Now after that period I felt really better, my social anxiety disappeared and I felt overall happier. To be honest I felt a change after one or two days!
After that one week and an half I wanted to test myself if I really do have pyroluria just to be sure! I stopped taking the B vitamin complex and Zinc for two weeks. Then I left an urine sample to a lab in the UK called Biolab! Two weeks later I did receive the results saying that it’s negative for Pyroluria! I scored 0.05/units per 1,000 mOsmol/kg and their reference interval is that all scores under 0.08 is negative.

Since I stopped the supplements I felt some of the anxiety coming back especially when around people but it’s still better than before I took the supplements!

Now should I accept the results or is it false because I took these supplements for a week and an half then stopped them due to the urine sample?

I eat a lot of oats and nuts and maybe that’s the reason i’m not having a hundred percent relapse of the anxiety!

Also my hair is thinning and I have some pimples on the scalp but according to my doctor i’m not going bald but it’s because of stress! I’m really worried because I don’t want to lose my hair I’m just 23 years old! I really want to know if it’s caused because of this condition!

I’ve been reading your website and youtube videos and wondering if pyroluria is my issue?

I have arguably 16-18 yes’s on the questionnaire, but I feel my primary symptoms are much more physical and emotions secondary or down stream. But truthfully, after 14 years of debilitating chronic exhaustion, I just don’t know?!

I was an ultra marathon runner and all around physically active person, plus an 80 hr/week executive. It all came to a crashing halt in my early 40s. I’m 56 now, lost my career, much of my savings, unemployed, can’t exert myself physically, mentally, or emotionally without exacerbating a laundry list of symptoms.

Sleep is a big issue. I have no problem with sleep onset, doze off in complete peace and tranquility, but wake 2-4-6 hrs later in complete full body pain, joints, muscles, whole body, tension, fully alert, and in despair. I feel like I’ve been poisoned or died and resuscitated. It’s not apnea but feels like I imagine a severe case would be. So needless to say non-restorative, and that’s the beginning of an exhaustive day, 14 years worth of them. I’ve always been an active dreamer. No amount of sleep, rest, or naps resolve exhaustion, and naps are just as painful.

Have you heard of anyone with sleep issues like this? Does this sound like pyroluria?

Hi Greg
I’m sorry to hear about this! With that score it may be pyroluria or at least a need for the nutrients. But I suspect there is much more going on – some things come to mind: high cortisol (like an adrenalin surge?), low GABA (muscle tension is a clue), low serotonin (affects sleep and pain too) and even parasites (which are very active at night). Low magnesium can also cause pain and anxiety.

Some concerns that I have is that my hair is getting grey and the hair is also getting thinner from the sides! My hair is not as full as it used to be and I have been getting some rash kinda like zits containing water when I squeeze them out! Could this be because I may have gluten sensitivity (don’t know yet, need to get tested) or because of some defencies in zinc or b vitamins?

I’m only 23 years old! I know I have pyroluria because I scored high on your questionaire too so I will get on the protocol soon! Just needed an expertise advice on this! Thanks in advance!

wow. I just heard of Pyroluria last week and told my daughter I thought we had it! then when I looked at the talks for today I was like YES!!! here is help for me…thank you!!
I went to my Functional medicine dr the other day and he said he had never heard of pyroluria, but was willing to do whatever test was needed. I took the survey and have 27 out of 29 and 12 of the next group! ugh. There are 5 girls in my family and we look pretty much alike.

My mom died at 69 laying on her bed depressed/hashimotos. I was diagnosed a few years back with Hashimoto thyroid after YEARS of being sick, miscarriages, horrible PMS, hemorraging periods (had a hysta 20 years ago) adrenal fatigue, ringing ears…dizziness? Menneirres? sinus infections always, bladder/yeast infections (candida) I was misdiagnosed for years by doctors…they said I had PTSD? and put me on anti depression meds. I got shingles three times…
I lived my childhood under my desk…i was too scared to come out. I was on tranquilizers in 2nd grade for anxiety/diahrea etc. (my dad was alcoholic) I lived with panic attacks for about 20 years…thought I was going to die.
I have been sugar free, dairy free, grain free (all gluten) on the auto immune protocol for 3 years…trying to heal my gut…i have no parasites? (stool test) but was so sick in Egypt and after coming home I couldnt stay awake…this was a few years ago and thus my search for health… went to the hospital thinking I was having a heart attack, but my thyroid was out of control….and thus my hashimoto diagnosis.
I tried bone broth for months…i have constipation (it changed a few years back from diahrea) I got tested and had low copper AND zinc and calcium. I have a water purifier.

I can’t answer my phone or the door anymore. I have a block/anxiety so bad…I hang out with my kids and they all think I am wierd, although most of them struggle with anxiety too. they take drugs though where I won’t. I have a mutated gene. I have fibro and can’t exercise or it ends in migraines for days. also from a bus wreck years ago…head injury??one Doc said my pituitary is non functioning? another said I have lymes another said I have mold poisoning….
I have been having insomnia and laying awake for hours. I get foot cramps/heal pain and supplement with magnesium. I have liver pain had my gall bladder out…had attacks since I was 16.
I am on HRT but now I have too many red blood cells (testosterone?) and have had to give blood to get rid of them. I am going to a hemotologist in July to see why. I am starving all the time because most foods bloat me and make me headachy/sick…I want to feel good before I die. did I just make a joke? I don’t have any friends because they want to go to lunch..and don’t believe me…so I don’t answer the phone… I can’t tolerate anything. I don’t even talk to my sisters.
I will be 63 next month. Is there hope?
thanks for reading this…there is more but the more I wrote the more I was like…geez…is she whining?
help if you can can. THANK YOU!
oh. I just took evening primrose, zinc and magnesium B6 …crossing my fingers…. the zinc is Garden of Life vitamin code raw zinc…would that work?
the B6 is pyrodoxal 5 phosphate…for mutated gene and the evening primrose is 1300 hexane free?
thanks again
Debi

I’m quite certain that my 17 year old daughter has Pyroluria. I counted 23 symptoms that she definitely exhibits. Her dream recall is so poor that she insists she doesn’t dream at all. I’m going to start her on Zinc, B6 and Evening Primrose right away. Her PMS is so severe that I had decided to see a gyno to discuss birth control pills. Of course I won’t after listening to your interview with Karla Maree.

Hi Brenda
I have never heard of Alice in Wonderland Syndrome but my quick peek at this link has me wondering about the word “hallucination.” The original work by Carl Pfeiffer with pyroluria was with schizophrenics so it’s possible she may see them disappear. Does she see large or small objects/people? And does she have the migraines.

I’m so pleased you resonate this with this for your daughter and will skip the pill. I hope she feels better very soon too

Please do keep me posted on the hallucinations so I can learn and share
Trudy

She usually experiences objects/people smaller than what they are but her more pronounced symptoms are sound distortions. She hears voices/noises (real, not imagined) much louder than they are in reality.

She does not have migraines, has never had mononucleosis or any of the other conditions listed as possible causes of Alice in Wonderland Syndrome. That’s why I’m thinking it may be caused by nutritional deficiencies. She is also hypothyroid.

Sensory Processing Disorder & Schizophrenia-like symptoms (perceptual), that can be exacerbated by (hidden) infections, nutrient deficiencies and possibly low blood sugar. That is my advice for you to look into for your daughter, after reading this “Alice in Wonderland Syndrome”.

Hi Trudy:..thanking you again for an amazing summit..I am new for the first time and overwhelmed with all this wonderful info..I am using it for myself right now..I have a phone apt with you in June..I am working on my anxiety/insomnia but feel insomnia related to high cortisol..so using all the supplements for help on this..adrenal problem probably causing all of the above.

The tryptophan not helping getting me to sleep so still feel it is the high cortisol..taking Seriphos very slowing on tongue. 5-htp has helped to get me to sleep in the past but probably caused more high cortisol so will avoid for now.

I did the pyroluria questionnaire and show 10-12 symptoms on first part and maybe 1-2 on second..would the supplements recommended still benefit me? I also did the questionnaire on anxiety..I am low serotonin, low gaba and low blood sugar..

Waking at 5am or earlier with a pounding heart, is this from low blood sugar or still the adrenals and cortisol.

Looking forward to speaking with you.

Thank you again for sharing all this wonderful info..doctors have no clue…they just feel you need a drug..

What’s the scoop on “look alike sisters”? How is that a factor/potential symptom? And what about mothers and daughters that look alike? Given the father’s issues, I was happy to see that she took a lot after me–happy disposition, social, and flattering to see my eyes, eye color, freckles, nose, etc.

Thank you, Trudy. I took in much of the Anxiety Summit, am inspired by your work and feel hopeful for the first time in a while. After hearing the various Summit speakers I have decided to start on the pyroluria protocol for reasons explained below if the details would be helpful. For now, I’m asking if you have encountered anyone who has had difficulty with intereaction between EPO and hypertensive meds? I am on 120mg extended release Inderal. I have found info stating that a) EPO has BP lowering properties and b) since both are changed in the liver, caution should be exercised when combining them. Suggestions related to modifying the dosages? My 1300mg EPO capsules are on their way.
As to details, I am 57, wife, have grown children, grchildren, am perceived as healthy and successful by my peers, though I confess to a bit of imposter syndrome. 🙂 I hold a BS in psych and soc sciences and am a musician. Did 10 years of active parental caregiving, stressful family life, attended university and worked part time at the end of which I entered menopause and crashed physically. Migraines, insomnia, lethargy, brain fog, depression, etc. (23 symptoms on q.airre, poss 4 more) Migraines stalled further education, ended music career, isolated me from social life. Started betablockers (Inderal/propranalol, 10 mg, 15 years ago for performance anxiety. Increased to 60mg then 120mg for hypertension and migraine prevention. Is controlling BP but not migraines. Added topiramate 25 mg 6 mos ago. Noticing little change and more depression. A lot of watery, scratchy eyes and extreme light sensitivity. Opthamologist says eyes are healthy. Was on bio-identical HRT for several years, stopped 1 1/2 yrs ago. Period free for 3 years. Still had hot flashes, dry everything. Eliminated gluten, dairy, soy, sugar, corn, peanuts, caffeine. Lost 15 lbs, BMI is 22%, I play occasioal racquet sports… Can’t find answers. This info has restored hope of a well life once again. Thank you for whatever further light you can shed. Like many here, the health factors have limited my income-producing potential. Am doing as much as I can independently, though certainly am to the point of reaching out for additional help if I don’t see results. Thank you for making yourself and these experts available to the public.

Gwen
I have not seen an interaction between EPO and hypertensive meds but anytime a dietary and nutritional approach is implemented you need to keep your doctor informed and may need to adjust meds accordingly.

Keep us posted on how you do on the pyroluria protocol. I’d also have you look at the brain chemical imbalances (low serotonin = imposter syndrome) and histamine issues (migraines)

I scored 32 on the Questionaire! This rings very near to my past and current life problems. I have hypothyroid and homozygous A1298C (MTHFR). I stopped Dr Ben Lynchs prenatal vitamin (taking because I’ve had 4 miscarriages), mostly because my anxiety was getting pretty high on the minimal dose (too much methylation I predict). I just started B6 and Zinc at your recommended starter doses. I have started answering my phone again already! That’s a huge difference, however, last night I had horrible shooting pains like sciatica down my hips and into my knees. Wondering if this is a sign that either my MTHFR is causing an accumulation of zinc and/or B6 and I’m becoming toxic or maybe it’s a deficiency in manganese or magnesium etc??? I haven’t started the evening primrose yet because we’re low on money but am eating sardines every other day. My diet is vegetarian but listened to your summit and became aware of my type A blood and need for more HCL. Drinking 3 glasses a day of water/ACV has drastically reduced my tummy issues!!!! Thank you! On pay day, I’ll look into getting your book. Just nervous about what I’ve read regarding zinc/B6 toxicity and neurological damage.
Thanks!

1. One theory says that a person suffering from pyroluria cannot utilise zinc and B6. So I guess even if such a person has zinc and B6 levels that are considered within normal limits, their body still might be unable to utilise these substances, leading to pyroluria. If this is my case and my body has enough zinc but just cannot utilise it, would I still “taste” the zinc deficiency in the zinc taste test?

2. My understanding is that if I have too much copper in my body, supplementing with zinc should help to reduce its levels. Is that correct?

I discovered your website after receiving an email from another source about your recent Anxiety Summit. The information you’re providing is absolutely fantastic. I’m not sure if you’re responding to newer questions on this thread but I thought I’d give it a try!

I saw the pyroluria questionnaire in “The Mood Cure” several years ago and answered “yes” to most of the questions and I thought I might finally have an explanation for my symptoms over the years. I ordered a test through Bio-Center Laboratory in Kansas and my result was a “6” so I thought I was on the wrong path and I didn’t start zinc/B6/EPO supplementation. You are the first practitioner I’ve heard say that the supplementation may benefit people who rely only the questionnaire without testing or who may not even have pyroluria. If only I had known!

Although I will try the supplementation shortly, I did opt to take a second test (today) through Direct Healthcare Access in Illinois (www.pyroluriatesting.com). I found out about this lab after someone commented at the primalbody-primalmind.com website that this lab offers the most accurate results available because the lab provides an actual kryptopyrrole result and a “corrected” kryptopyrrole result. (The corrected kryptopyrrole result accounts for the concentration or dilution of the urine specimen.) I would be very interested to know whether or not you’ve heard about this lab.

I have two quick questions. First, could you elaborate on why the zinc/B6/EPO supplementation may benefit people who rely just on the questionnaire (I had 26 “yes” answers on your questionnaire) or who may not have pyroluria? Even if my second test isn’t positive for pyroluria I’d like to know more about how this specific supplementation could be helpful to me. Also, have you had clients with ADD whose ADD symptoms have improved with this supplementation? I haven’t been officially diagnosed with ADD but I’ve always suspected I might have it. I’d be curious whether or not you think pyroluria can cause ADD-like symptoms (although questions regarding focus don’t appear to be on the questionnaire). I guess I don’t know if high anxiety is responsible for my problems with focus or if it is actually ADD.

I had to delay the pyroluria test one week so I’ll let you know the results. However, I just had an “aha moment” because I bought and read Datis Kharrazian’s book for the first time and some of my symptoms (which I thought might be pyroluria based on my score on that questionnaire) also sound like the symptoms he lists in his book for poor dopamine activity. It’s interesting how pyroluria and poor dopamine activity have overlapping symptoms such as an “inability to handle stress” and the “desire to isolate oneself from others.” Do you know why dopamine impairment would cause the specific tendency to isolate oneself from others? (I couldn’t find his explanation for that in his book.) I need to carefully figure out whether to start a pyroluria protocol or a dopamine-boosting protocol. It’s a tricky situation- I’m trying to help myself since I don’t have the money to have a thorough workup done by a professional.

Because you asked, I thought I’d give you a quick update regarding my second pyroluria test results from Direct Health Care Access in Illinois. My uncorrected test results were 10.98 (labeled high) and my corrected test results were 37.34 (also labeled high). It was recommended that I receive treatment for pyroluria. Regarding my previous question about Datis Kharrazian’s dopamine impairment symptoms list (i.e. “a desire to isolate oneself from others”)- does dopamine have a relationship with oxytocin in your professional opinion? I know you’ve mentioned that pyroluria may have a connection to oxytocin. Thanks!

This one Oxytocin, motivation and the role of dopamine: states “oxytocin appears to impact dopaminergic activity within the mesocorticolimbic dopamine system, which is crucial not only for reward and motivated behavior but also for the expression of affiliative behaviors” (http://www.ncbi.nlm.nih.gov/pubmed/23850525)

Hi Trudy,
I was referred to your site after posting my story on a Chris Kresser blog about gluten intolerance. It’s a long story, so I won’t post it here unless you really want it! Basically I checked all but 2 on the questionnaire. I also have idiopathic seizures, multiple allergies, chronic pain, and recently acquired chronic mono from Epstein Barr. Just learned this week that B6 and Zinc are critical in overcoming chronic EBV. That’s obviously not a coincidence! I will be trying your recommendations!!!! I had never heard of pyroluria before. I am so grateful to you for this website!

Thanks for what you do.
Could you explain the use of biotin as an antioxidant and its increasing pyrroles excretion. Is this a good or bad thing? Why do you believe the pyrrole testing is not reliable?

Re the pyrrole testing – this is based on seeing a 100% correlation with the questionnaire and positive results from the Vitamin Diagnostics lab before they changed their testing. Once that happened I started using their new test and pyroluria testing from various other labs and the correlation dropped to 50-60%.

Hi Trudy
I have Pyrolia and have been up and down with it for 1.5 years, I now have adrenal fatigue, do you have any advice around this ? Can you keep taking your b vitamins and zinc I read somewhere this can prevent the adrenal fatigue recovery? I also now have endo so am dealing with alot but believe it could be all connected?

Hi Trudy,
I was introduced to you and your work through The Depression Summit with Sean Croxton. I loved your interview and also the Q&A…I just read above in these posts about Alice and Wonderland Syndrome and oh my gosh that sounds so much like me. I also get very frequent migraines and had mono when I was 20. I’m 45 now and have had Fibromyalgia pretty much since the mono :(. My question is really about the Pyrolauria Protocol..I answered yes to 30 of the questions and recently started taking 100mg B6 (waiting to start zinc until I get the liquid to do test). My question is about dreams. All my life I have had very very vivid dreams. I don’t remember a time waking up that I haven’t recalled at least one dream. I also have struggled with nightmares, sometimes severe, off and on for years. I am wondering if remembering my dreams so much means I’m not deficient in B6 or if I still could be, hence the nightmares. I do not have nightmares every night though. Also I take Tramadol and 1mg. Klonopin for Fibromyalgia pain and muscle tension so could these meds interfere with the B6 results/nightmares, etc..? Thank you so much..you rock, Lady!!
Nancy

Hi Nancy
You are so welcome – glad you enjoyed the interview and the Q and A. That’s interesting about the Alice in Wonderland Syndrome. Please do share more….what are your symptoms now? and I’d love to hear if any of them change once on the pyroluria protocol

Dreams should be pleasant and we should recall them every morning. Vivid dreams, especially if they are weird, and nightmares mean low vitamin B6.

Medications could potentially have an impact on dreams. If you’re looking for other options GABA and tryptophan can be very helpful for Fibromyalgia pain and muscle tension. Obviously work with your doctor before changing any meds.

I apologize if I ask too many questions. I’ve had very good results with the pyroluria protocol, that is, 30 mg of zinc and 100 mg B6. But after a week I started to feel that my arms and fingers started tingling. I had also read in your book that if it would were to happen I should switch over to P5P instead, which I did. Said and done, I ordered a bottle of P5P by Thorne at 33.8 mg per tablet. I suddenly felt much better and began to dream more, even my social anxiety had disappeared completely. But the tingling in my arms and fingers were left. what do you think I should do to prevent this? I read somewhere that if you add magnesium as this would prevent that from happening, is that correct?

What are the best forms of zinc to consume? (monomethionine, aspartate, citrate, chelate…) I have a b-complex that includes b6 and I’d like to include zinc on it’s own since I tried the optizinc and threw up each time (even when I tried it after meals, in the middle of meals and so on).
Thank you!

I own your book (bought a few years ago) and it has been a great help. 🙂 Thank you! I wanted to give you some feedback and ask some research-oriented questions. So – first off – some feedback that you may find useful: I “fit” the pyroluria profile, so I ordered the exact Zinc Challenge test from amazon and tasted NOTHING. It tasted like water. So then I started zinc sulfate – 25mg each night. Immediately it was a HUGE HELP. Sense of smell returned (I didn’t know it was missing?!), I slept like a rock (lowers cortisol probably), and had a complete absense of any PMS symptoms. I also started to lean out naturally and lost bodyfat without trying while seeming to almost preserve muscle. It was unreal. I thought it was the best thing ever. But about 6 months later, I started losing hair everywhere. It wasn’t a focal hair loss, but a diffuse one. I didn’t associate the zinc, but went to the doctor. They did a full hormone panel and thyroid and everything was normal. I could “feel” the tingling in my scalp as it would happen, and I would touch my hair and come away with at least 15 strands at a time. I lost over the course of about 6 months – half my hair volume. In this same time, I started getting bone pain – it was subtle, but it was there. Still – didn’t associate the zinc. THEN, for the first time in my life, I got eczema on my hands! And I started waking up with nausea and EXTREMELY cold — like chills – for no reason. What was happening? Well – one day, in the middle of a hair-tingline episode and after having seen a dermatologist for the eczema, I took 2 TUMS (calcium carbonate) for minor stomach upset. I immediately felt the hair tingling STOP. A few hours later, the tingling started again – and so I took 2 more TUMS. Sure enough, it stopped. I started taking CALCIUM supplements with vitamin D and in 1 week, my eczema was gone. I had my vitamin D tested and it was 29ng/ml — slightly insufficient. I started taking 5000-10000iu of D EVERY time the tingling would start and began to incorporate more calcium-rich foods and STOPPED THE ZINC. The bone pain immediately ameliorated. The eczema left for good. The hair grew back. This is good feedback because zinc and calcium compete for absorption. I believe that while zinc helped me big time, I took it too long and at too-high doses for my personal needs. I used the Zinc Challenge test periodically, but I didn’t stop the 25mg of zinc when I could taste it strongly. I probably SHOULD have stopped the zinc at that point and just used dietary sources and no supplement, but I just kept taking it thinking that 25mg isn’t much zinc. It was. 🙂 So – I believe the zinc threw off my calcium absorption and also may have contributed to the overutilization of stored vitamin D3 (since zinc is a co-factor of D). I have stayed “positive” on the zinc challenge now – even though it has been over a year. In addition – the zinc may have lowered copper TOO much, as after my research, copper is important in bone building and a deficiency can contribute to bone pain. I STILL have to supplement D at 5000-8000iu a day AND take calcium because my levels are not yet “normal”. I DO also notice that after too many days of high-zinc foods, I need extra dietary calcium because the hair tingling comes back. So – I really threw off my chemistry somehow with that much zinc. That is not really “that much” zinc — not compared to the recommendations – so this is good feedback – because folks will want to monitor their status with the taste test CLOSELY. If I had not read up on this myself and put two and two together, I would likely still be having problems. I think I was easily in a state of zinc toxicity and I did that to myself. So please watch others for this effect. The eczema was a tough one – but after MUCH research, eczema CAN BE caused by hypocalcemia – which would explain why it responded so quickly to calcium supplements and why the zinc was preventing me from absorbing enough calcium from food. (I eat a great calcium diet, but the zinc got in the way!)

Next – I wanted to know a bit more about pyroluria from research. I have a background in research (M.S.) and cannot find anything on PubMed regarding pyroluria. It looks like you don’t recommend the urine test anymore – so what evidence do we have that pyroluria is a real condition? Is there other research and where does that exist? I am just curious to read more about it.

Finally – I started about 10-20mg of b6 each night (pyridoxine) just about a month ago. (I also take with 100mg magnesium glycinate) Sure enough, I’ve started having and remembering dreams. 🙂 B6 is the only “new” thing I’ve added, so I know that is the cause. It has also helped with bloating and PMS which I LOVE. That seems to be a cause/effect with B6 in the research, but I’m wondering more about “what that means” and whether it will “throw off” the other B vitamins. To this end, I’m taking half a B50 complex daily to round out the other B’s just in case. But what is your take on this? Any follow-up blood tests with clients give you any insight into the safety of B6 over a long-term basis? I wouldn’t want the excess b6 to affect other nutriets, folic acid, etc. Thank you in advance! 🙂

Meredith
Thank you for sharing. I have not come across anything like this so I suspect it’s a rare situation. But will certainly keep it in mind and am pleased to have this information on the blog for others to read.

Most papers were published in 1970s and 1980s and can be found on the site of the Journal of Orthomolecular Medicine http://orthomolecular.org/library/jom/index.shtml. I’m not sure why these are not shown in pubmed and wish they were. We really do need some new research to get more acceptance in the mainstream.

Taking a B complex is always recommended when taking any individual B vitamin.

I have about 19 of the symptoms on the pyroluria questionnaire. I say 19 because those are the only ones I am sure of. I don’t really recall in childhood whether I had the shyness or not, but very possibly. I have not done the zinc challenge yet. I used to have bizarre dreams and nightmares (back in my 30s they were horrid) often but not so much since I have changed my diet drastically and began taking OptiZinc. I have just begun Designs for Health multis. I do recall more dreams now, since the OptiZinc. As far as alcohol, when I used to drink, I had horrid hangovers the next day while other people I drank with did not. I rarely drink nowadays, since about 8 years. I drank to self-medicate many times. I do have 3 other sisters, and the youngest one has social anxiety and is on benzos and SSRIs. She fits pyroluria perfectly to a T – palest in family, very pale actually. If you put the same wig on all of us, we’d all look pretty much the same – very, very similar in looks. I have 2 brothers. I also have the afternoon and evening carb cravings and sugar cravings, even though I have cut about 95% of sugar out of my diet. So, there’s work to be done yet. The symptom that bothers me the most is that I do get frequent bouts of depression and fatigue. I’ll go along just fine for a period and then, ‘boom’ I get exhausted and then some depression follows, I believe due to the exhaustion or fatigue. Rest usually picks me up. Strange! What do you suggest for me? I haven’t taken the 100 mg of B6 yet, but I do take 1 multi which has some B6, so if I’d take 2 of the multis, it would give me 50 mg B6 daily, and then the OptiZinc has 20 mg of B6. I do consider myself one of those ‘pixie dusters’ so I am afraid to overtake anything. I am sensitive to drugs, multivits, and even some over-the-counters. One more thing…. I began with anxiety and panic attacks in my 20s. Those cleared up somehow, long story, but anyway, I do feel anxiety from time to time and as I said above, the bouts of fatigue, etc., and I do tend to isolate.

Cindy
You posted this question on another blog but answering here too – I have pixie-dusters start low but even for them the typical pyroluria protocol seems to be fine – 30mg zinc, 100mg vitamin B6 and 1300mg EPO (over and above what’s in a multi and B complex)

Dear Trudy. As I learn more about Pyrrole Disorder / Pyroluria I was wondering about the usefulness of ‘white nail spots’ as a clinical sign ? Would be handy if we had some data on the sensitivity / specificity when looking for these clinical signs as I agree the urine test has a range of limitations. From your presentation as part of the MentalWellness summit it would appear that your patient cohort would present a fantastic opportunity for researching this very important biochemical anomaly. Kind regards, Werner

As far as the nail signs go, I’m thinking ..
.. start with observational work on new clients, screen for presence / absence of nail signs in context of your Pyrrole questionnaire and urine pyrrole if available .. then prospective observational work can be done to see how nail signs may change and perhaps correlate with nutrient therapy and scores from questionnaires ??

Urine testing ..
.. barriers include logistics e.g. being a long way away from a lab given sensitive technical / chemical requirements .. chance of having a false -ve e.g. someone may only get around to doing the test while they are on holiday .. also cost is a big factor

Pedal4Pyrrole ..
.. at present intentionally ‘low profile’ while seeking to understand the place of Pyrrole in the scheme of things .. need to keep Pyrrole Disorder away from the Insurers, also careful not to negatively impact professional careers of people with Pyrrole .. perhaps a classic example of not needing to medicalise poor lifestyle choices. All the while I’m learning about hosting a website, at times more fiddling and feeling clueless. My vision is to have a ‘not for profit’ web based resource from where people can access information as part of a wellness model, with links to practitioners when needed. Early days …

Although this is an old thread, I’d like to comment on my experience with kryptopyrolles and white spots. My son has never had white spots, but his kryptopyrolles came back at 10, very high. He was suffering from bouts of suicidal depression which I was able to tie to food dyes (U.S. FDC dyes). Zinc supplementation raised his baseline mood and self-esteem and completely stopped the severe depression/suicidal bouts. He used to be autistic but now is not–he does struggle with ADHD and anxiety still–I will look into increasing his P5P to see if this helps. Will question him about dream recall when he gets back from camp. There is no question in my mind that zinc saved my son’s life–it did.

Rocketmom – thanks for sharing your son’s wonderful results with zinc! B6 is needed to make brain chemicals; for ADHD I look at gluten, low blood sugar, low iron/ferritin and a trial of tyrosine (the latter once anxiety is addressed); for anxiety I look at all of the above plus low serotonin, low GABA and high cortisol to start.

Hello Trudy, I am a 21 year old male. I’m very interested by a lot of the information on this page and think I very well may have pyroluria based on the questions. Have just a few questions before I start taking some of these supplements:

To give a bit of background, after a traumatic experience, I went through some very serious depression, which I have recovered fairly well mentally from, but it seems I crashed physically. I have always been prone to some depression and anxiety at stressful times. I’m feeling very foggy, inattentive, anxious, low in energy, have epigastric pain (hiatal hernia maybe), and most recently, very annoying and continual pain in my shoulders and neck. I feel entirely too young to be dealing with this. The anxiousness/fear feelings are much worse at night when all is quiet and I’m laying down to go to sleep.

I started taking a supplement called Neuro Clarity the other week, and it seems to be helping some with my list of symptoms. It contains st johns wort, glutamine, phosphatidylserine, bacopa, acetyl-carnitine, DMAE, ginko, and vinpocetine. I would like to take this for at least a few more weeks to see if it really makes a difference. If it seemed worthwhile to continue to take, would any of those ingredients be contraindicated for a regimen of zinc and b6?

Also, going along with some other commenters, I have experienced sensations similar to Alice in Wonderland Syndrome throughout my life, more so during periods of stress. The feeling of being extremely small somatically, like how you feel when in a football stadium. Interesting connection. Thanks so much in advance.

Thanks so much for the response. Are you still offering the quick phone consultations you mentioned above?

Are the amino acid deficiencies downstream effects of pyroluria, assuming that that is my issue, or do you believe those are separate issues that need separate treatment? Also, I was under the impression that GABA supplements were unable to cross the blood brain barrier, hence medications like gabapentin?

Thank you for your wonderful post and other very helful posts. I’ve read your book and have recently started following your blog. A lot of the symptoms I have experienced the past few years (with no help from pharmaceutical agents and possible worsening from them) are appearing on your questionnaires on GABA and Pyroluria. I am continuously feeling worse and need some guidance on a few things that can increse GABA / and what you’re mentioning here for pyroluria.
Is there any possibility we could do a consultation? My symptoms have changed my personality and I am barely hanging in there as a functional human being. Every day has been a struggle to get through and I would be so grateful for some time to chat about these remedies you speak of.
Best,
Michelle

Michelle
I’m so sorry to hear this. Right now I am not taking on new clients but please feel free to sign up here to be notified when this changes https://www.everywomanover29.com/services.html. Do scroll down on that page to find some additional resources to get you started now

What a wonder-worker you are! Supplementing with zinc + B6 has been absolutely life-changing for me … it has improved almost every aspect of my existence. How strange that no one (dozens of doctors) ever tested me for this! I can see the effects of Pyroluria in my family tree going back generations … it is astonishing. It feels as if my eyes have been opened at last.

I’d like to help raise awareness about this highly treatable, highly common disorder. You say 40% of the population, but among artists — I am a fiction writer, myself — I feel that number could be even higher, and perhaps high copper is why creativity and madness have historically been linked. I have heard people mention Emily Dickinson and Charles Darwin as possible pyrolurics; I am thinking Glenn Gould and David Foster Wallace probably were, too. We tend to turn inward, and to be intuitive, yes. But then we often take the fruits of what we discover and bring them out into the world (that’s the part that can be disorienting!).

Alethea
How wonderful to hear your fabulous results – I’m so happy for you and can totally relate since I have pyroluria too.

That’s such as interesting observation about artists. Well said… “We tend to turn inward, and to be intuitive, yes. But then we often take the fruits of what we discover and bring them out into the world (that’s the part that can be disorienting!).” I’d love to hear what percent of artists/writers you feel could be affected by this?

Great idea to establish a charitable organization to help raise Pyroluria Awareness and offer assistance! It’s on my list and I’d love to have you contribute! I’d also like to get some studies published so pyroluria is more accepted. There are some plans in the works for this.

All the best with your new book. Something to think about for a future book…as a writer you have a wonderful opportunity to share pyroluria stories too!

Hello, Trudy!
I suspect a very high percentage of writers/artists could be affected by this, and that the traditional association between creativity and madness could simply be a matter of copper imbalance (i.e. insufficient zinc to make copper bioavailable so toxic “unbound” copper accumulates in the brain), coupled with low GABA and low serotonin (from low zinc and low B6, respectively). Just think of the stereotype of the composer at work, trying to finish his symphony, being addled to the point of explosive outbursts by every little interruption … or the huge number of artists who’ve suffered from addiction, suicide … Hemingway, Fitzgerald, Sexton, Styron … the list goes on and on.
My last book was a little book of short stories, but this next book wants to be a bit bigger … and there IS a link (in terms of its content) to Pyroluria — so I will be hoping/praying and watching/waiting to see if perhaps someone can set up a 501c in the next year or 18 mos.
Thank you again for all that you do!

Hi Alethea.
Pyrrole disorder and how it is part of life for so many is getting more interesting by the day. On the topic of artists and copper imbalance, I’ve been wondering about ‘van Gough’ for some time. I’ll watch this space as the story unfolds.
Sincerely
Werner

Some of my initial thoughts: obviously the anxiety and depression and the isolation; they say possible schizophrenia; he ate poorly, didn’t like meat and drank/had an alcohol addiction; he had a brother who was stillborn. I also wonder about low vitamin B3/pellagra and the paranoia connection and commonly seen in drinkers

Thank you Trudy, a very interesting article indeed with much to contemplate. By chance my wife and I met a knowledgable lady on a train while visiting Europe and so happened to visit the Kroller Muller museum near Arnhem Netherlands. Some time ago I passed information on to her in the hope that we continue to explore and perhaps better understand Van Gogh’s story. Who knows, one day the dots may connect as I think we can get it wrong when we diagnose through the glasses of our medical model, just take the DSM5 as an example.

Some information that may help others. Because my son’s pyroluria is so serious, its fairly easy to see the effect of what we give him.

My son has extreme sensitivity to medication and also seizures.

You need to take the activated form of B6. The non-activated form can cause damage to your nerves but the activated form doesn’t do this.

People suggested seperating the dose of B6 and zinc by several hours. I found this to be detremental. He was seriously worse off when we did this. I tried to do this several times with the same negative result each time. The best way we found was to take the zinc and activated B6 together in six doses throughout the day.

My son was made pschotic by a neurologist keeping him on epilepsy medication who didn’t believe in side effects and when this neurologist was finished, my son was super sensitve to practically everything including things like vitamin D and vitamin C. My son’s body was left in mess by this neurologist.

We found the way to address this sensitivity was to avoid the reaction (don’t give him anything that he would react to) while giving him B6 and zinc and the reaction is improving. It went from a 4 day reaction to a 12 hour reaction. The reaction was like a stretching a rubber band. For the 4 day reaction, the reaction was much greater than the reaction on 12 hours.

For some reason glucosamine HCl (this is the only form of glucosamine that did anything – we tried glucosamine KCl and N-acetyl glucosamine but with poor results) reduced his seizures by 70%.

His sleeping was terrible. I’m assuming this was because the B6 is necessary to convert the neurotransmitter glutamate to GABA. Glutamate is excitatory and GABA is calming. Eventually, without enough B6, the glutamate will short circuit the brain and cause seizures. However when you start the B6, it takes time for the seizures to improve because I’m assuming that the GABA receptors have to reactivated or some such (I’m not sure exactly).

Also the amount of activated B6 depends on the severity of the pyroluria. For minor cases, as little as 40mg of B6 is sufficient with zinc (divided into several doses). For severe pyroluria, much more is needed. My son is on 600mg of activated B6 and this making a big difference to him. He cannot tolerate the B6 in large amounts so we have put 25mg per capsule with apple fibre as a filler which he tollerates with no issues.

Also, metabolic specialists have been no help since they do not believe pyroluria is a real metablic disorder. They may be right in a sense because the mechanism may be different to what people currently believe it to be. However, they do not investigate and are not interested in investigating the disorder since they don’t believe it exists. Head in the sand.

I have many of this symptoms and i’m considering taking Zinc, B6 and Primrise oil. My question is: I suspect that my testosterone levels are high (i have facial and body hair and loss hair in the front of my head) and i read that zinc increase testosterone. Is it safe for me to take?

Catarina
I’m afraid I can’t give individual recommendations on the blog. If I was working with someone who suspected high testosterone I’d suggest working with their doctor, getting tested, finding out why it’s high and addressing it

Diane
This is from webmed but anyone who is pregnant or breast-feeding should talk to their doctor about any supplements they are taking.

Pregnancy and breast-feeding: Zinc is LIKELY SAFE for most pregnant and breast-feeding women when used in the recommended daily amounts (RDA). However, zinc is POSSIBLY UNSAFE when used in high doses by breast-feeding women and LIKELY UNSAFE when used in high doses by pregnant women. Pregnant women over 18 should not take more than 40 mg of zinc per day; pregnant women age 14 to 18 should not take more than 34 mg per day. Breast-feeding women over 18 should not take more than 40 mg of zinc per day; breast-feeding women age 14 to 18 should not take more than 34 mg per day. (http://www.webmd.com/vitamins-supplements/ingredientmono-982-ZINC.aspx?activeIngredientId=982&activeIngredientName=ZINC&source=2)

Hi Trudy I recently read about Pyroluria through you and noticed that the extreme inner tension popping joints and other symptoms matched me perfectly so although I did not get the test I started on the supplements. I began noticing some improvements even one night I felt the tension had gone away, I was so excited however shortly after I crashed due to the PsP 5. Started to get extremely irritable and very sleepy just wanted to sleep the whole day. It felt like a toxic effect. I know it was the b6 because I’ve had similar experience with b 12 in the past. Can it be that I have Pyroluria but for some reason even though my body has a need for the supplements it’s unable to process them correctly?

Chris
Glad to hear you saw some benefits – this is promising. When I see effects like this I think the form of the nutrient may be the problem or possibly too much. When I hear irritability/toxic effect I think possibly too much zinc and copper dumping.

What’s strange is that it always happens whenever I take vitamin B12 or b6 it like puts me in a rage. These last couple of months I’ve deleloped a tightness and twitching of the neck, caused from the severe tension, it’s pretty scary. I was only taking 50 mg of PsP. What would you recommend? I searched online and also other people go into a rage with B 6 and B12?

Chris
As mentioned above with strange responses I think the form of the nutrient may be the problem or possibly too much. I encourage you to find a good practitioner to test and guide you. Doing genetic testing though a lab like 23andme may be useful. And possibly Spectracell to check all nutrient levels.

Dear Trudy,
I have recently seen a naturopth who said that if i dont have the MTHFR gene/s then my pyroluria is not genetic and can be treated as a symptom (not requiring supplementation for life) of the body being out of balance and once corrected, i wont require pyrrole supplements. I had a blood test for mthfr gene but it was negative (i am not sure id that was for both genes?). My question is: if you dont have the mthfr gene/s, pyroluria is then not genetic?, and if it is not genetic pyroluria, the can it be corrected just through diet,healing gut lining, clearing hormones and yeast/candida and supporting methyl pathways?
I am a bit lost and would greatly appreciate some insight into this line of thought?
Warmest thanks,
Angela

Angela
Based on the work of Carl Pfeiffer, pyroluria is genetic. I have heard some practitioners (like Jess Armine) saying pyroluria is not always genetic and right now I disagree but am open to having my mind changed if I see the evidence.

I can share that I am seeing a connection between pyroluria and the MTHFR gene. But this is the first time I’ve heard that if you don’t have the MTHFR gene/s then your pyroluria is not genetic and can be treated as a symptom. I would love to know where she heard it/learned about this so I can learn more. Right now I don’t believe we know enough to make a definitive statement like this.

I would say not to worry about it and base future decisions on how you feel and do when on the pyroluria supps and when off them. If they help then you’d want to continue.

May I ask how you score on the questionnaire? and if you did the urine test? and the result?

Dear Trudy,
Thank you for your reply. I will ask next time I visit my new naturopath where this came from.
Even thou i recall my Dr in the past saying I did not have the MTHFR gene, I respond really well to SAMe and inositol. I have not been maintaining my pyroluria supplements since having my third baby in April 2012 and my fourth baby 2014. I am struggling big time and saught out the advice of a naturopath so I could get back on track as I am not 100% sure of the levels to take while breastfeeding.
My Urine test for pyroluria (Australia) in 2008 was 29.7 for pyrroles and the questionnaire test from above and in your book was; most common symptoms 22 out of 29 and less common symptoms 11 out of 13.
I feel I become very agitated on b6 (take p5p) when taking it again, as in the past when I take anything that is activated B’s in a formula i get really racing, agitated and anxious (like high Adrenalin). I wonder if this happens more when my zinc levels are low and I not supplementing a high enough dose of zinc to elevate my zinc levels, while taking high level of B6 (p5p) – like the ratio is out? Is this common? especially with high blood copper levels.
Thank you for your amazing work and support in this area.
Kindest thanks,
Angela

Hi Trudy, I’m sure my son has pyroluria. He has all symptoms and the test came back positive from the Direct Health Care Access laboratory. He is high in KRYPTOPYRROLE (URINE) 25.81 but he has a normal Zinc, Plasma 115 ug/dL so I wonder if I should supplement with zinc? Is it normal sometimes with pyroluria to have a high zinc status?

Flora
I don’t find plasma zinc to be very accurate and would also look at if he has low zinc symptoms (joint pain, stretch marks, poor appetite or sense of smell etc), alkaline phosphatase (< 70) and the zinc sulfate taste test.

First of all I want to thank you for the amazing information you bring to all of us who are mostly clueless about amino acids, neurotransmitters and everything else!

I know for a fact that I am zinc deficient and I’m currently taking 15mg of Ionic Zinc which is in liquid form. I meet almost all of the criteria from your questionnaire and I believe I might also be B6 deficient because I suffer from horrible chronic migraines and anxiety rules my life. I am only on b12 but I believe I should add some b6 as well. What is your recommending dosage and what brands do you like?

Hi Trudy,
I have many of the symptoms on your questionnaire, and it’s probable that I do have pyroluria. However, I feel that I probably have Aspergers as well, and many of the symptoms that you mention for Pyroluria overlap with the symptoms for Aspergers Syndrome. What are your thoughts on this? I feel like there is a common thread in both of these problems.

Loren
A B complex typically has 50mg of B6 and the starting dose for most of my clients with pyroluria is 100mg, going up to 500mg and or adding in P5P, so doing both the B complex and B6 and or P5P works best for most

HI Trudy,
I am so glad I stumbled upon your blog. I have many of the symptoms on your questionnaire. Growing up very as a very fearful child. I have suffered from anxiety for about 10 years. Always seeing nightmares. I learned to manage it somehow but they still come back from time to time. One of the symptoms that I saw on another blog about Pyroluria and was always a puzzle for me was premature grey hair. When I was about 12 years old I had a lot of grey hair but over time they turned black again. What could this mean?
I’ve always been taking multivitamins which contain 25mg b6 and 9mg Zinc twice a day. I know that’s very little compared to the recommended dosage but wouldn’t it help a little bit because I haven’t really noticed any difference. I’ve been taking it for about 3 weeks.

Thank you so much for your response Trudy. I will try this out. Another interesting thing that I have been reading about lately is the link between mouth breathing and anxiety. Have you heard about this?

I have known about having Pyroluria via Julia Ross questionnaire. I now have been diagnosed with MTHFR and have been prescribed Deplin 15. Are these condition related and is there a conflict with the Deplin 15 (L methylfolate Ca) and the treatment for Pyroluria? They both have to do with vitimin B.

Debby
I know this isn’t your question but please be are that MTHFR is not a diagnosis but rather means you have one of the polymorphisms or mutations. Even with this it doesn’t actually mean it’s expressing and causing an issue ie. methylfolate may or may not be needed. Another factor: 15mg is a very high amount so please be aware that too much can cause issues (Dr Ben Lynch discussed this in this interview https://www.everywomanover29.com/blog/anxiety-summit-methylfolate-anxiety/). And another factor: there are other genes that may need to be factored in to a supplement plan (like COMT, CBS, MTRR etc). Finally I am not a fan of Deplin due to all the other ingredients.

To answer your question – it seems that many folks with pyroluria do have one of the MTHFR mutations.

I answered the questions and it turns out I have almost every symptom. I do not know if I can buy all the ones you recommend at once. So if I had to choose 3 or 4, which ones do you recommend and can you recommend any specific brands? I am sure zinc and b6 should be at the top of my list for sure.

Thank you for the quick reply. I am going to start these supplements as soon as possible. There is something else I wanted to ask about. When I was younger, about 12 or 13, I was told I had a severe hormone imbalance and a zinc deficiency. Are there supplements for a hormone imbalance or do I need blood work to know specific levels? I only recently stumbled onto research that highlighted some of the problems of a hormone imbalance. I wish I had known just how serious it can really be when I was younger.

Hi. There are no practitioners in my whole state of TN who deal with these type of problems. I am so sick I can no longer travel and have been to 30 doctors and Naturopath doctors with no luck. This has been going on now for 18 years at least.
I have mthfr, leaky gut and SIBO as well as suicidal depression and panic and anxiety and hypothyroidism as well. List goes on and on… I have given up anyway.

Would you suggest giving an 8 yr old boy and 5 yr old girl the 30 mg zinc, 100 mg B6, 1300 mg evening primrose oil. Or would a child’s dose be lower. The whole family was able to check off so many on the list above so I wanted to start us all on the vitamins.

I just did the checklist and checked every statement on both lists except for a total of 3…I have never heard of this genetic issue before but by this checklist I feel like you know me better than anyone else ever has in my life. Amazing!!! is it advisable to take a B complex supplement or only the B6?

I forgot to mention that my sister and I are mistaken for twins almost daily even though there are a couple of years between us and we have different hair and eye colors…and we belong to an all girl family…wow, I just astonished.

Deb
It appears the GLA in EPO is more bioavailable so more Black Currant Seed Oil may be needed. Fatty acid testing could be done or base it on how quickly zinc improves (as GLA enhances zinc absorption) and other symptoms like PMS (GLA helps reduce these symptoms)

Trudy, I think the purple stains I got were from my mixture of Lemongrass massage oil for my skin. Sorry…

I should tell you that the last two weeks I have been in withdrawal of a Benzo, and I quickly had to order some items like Magnesium Citrate, L-Tryptophan, Vit D3, and B12 from Amazon.jp, three things came, but I ran out of B6 and B12! Wow, what a shock. I was doing so well until then. When I took the above supplements that came in I was greatly helped, plus the zinc etc. I am taking. It shows me how imperative it is to stick to the supplements, especially when withdrawing from such medicine. I cannot thank you enough for all the talks you have given that I was able to listen to and your book, The Anti-Anxiety Food Solution. I am truly grateful for your help in this area! Why is it that it took me so long to find this information? Anyway, I am so happy for having all your advice, in videos, and in print!

Heather
Thanks for the update on the purple stains and love hearing about your wonderful results! It’s good to hear the supps are helping. Too many people say those in benzo recovery should not take any supplements and I don’t agree with this across the board. I think it’s very individualized and if it’s helping I say why not use them.

Hi Trudy,
I have been taking zinc and vitamin b6 for about two weeks and I felt better! Now I ordered the pyroluria test because I want to be 100% sure. Should I stop taking the vitamins for a period of time and then do the test or should I do right away?

I score over 30 on the test. I notice symptoms in my teenage daughter and 9 year old son. I can really see these symptoms as I think back to my late father and grandfather. Also, whenever I add in a lot of omega3 foods in my diet my social anxiety and depression worsen rapidly. Is this a slam dunk that I have pyroluria? Should I have my kids and I tested or just jump into the supplements? What do you think the best diet is for pyroluria? I have tried the vegan thing and it wrecked me!

Dr. Jack Kruse wrote this and I was wanting your thoughts on what he had to say. Is it possible to treat this disease with just diet and sun?

“DHA is not a problem in this condition at all. That is a meme that makes it circles every so often from bad info from paleo circles. Pyrroles bind with B6 and then with zinc, thus depleting these nutrients. When you eat an Epi- paleo diet and get in the sun these patients usually need nothing else. The disease itself has very few manifestations and tends to be a bigger deal in kids who are undiagnosed because their brains are not mature and it can affect their behavior”

This is the first I’ve heard of this and would need more information to be able to comment. Right now I would have to say absolutely not. Can you please share a link to where you read this as I searched his site for pyroluria and pyrroles and nothing came up. Thanks!

Thanks Shane – I took a quick read and still don’t agree. I’m going to go thru his blog post more carefully and will comment on it and try and get some feedback as to why he doesn’t feel pyroluria exists. It may simply be that it’s not something he’s come across very much. I do agree with some of what I read about omega-6s (but need to go back and read it all carefully). Thanks for asking the question and coming back with the link!

I’ve been doing the Vitamin B zinc and GLA protocol for a couple of weeks now. I’m having what I consider pretty good success. Here’s what I’ve been doing and in what amounts.

I’m a larger lady(200+) so the weeny doses of the starter protocol did nothing for me for the first week and a half. I took the bull by the horns and decided I would increase my supplements until I felt better and noticed a dream difference. I also added a ‘nutrient’ I guess you could call it that I used to take for what I thought was fibromyalgia a few years ago. here goes:

I take 4 mixed form magnesium softgels spaced throughout the day as well saving two of them for the evening hours.

in the evening I take 2-3000 mg of Vitamin C-to reduce cortisol at night and for general health. Another 200 mg or so of GABA Powder before bed and stir 1 tbsp. of d-ribose into warm water also before bed. D-ribose supplies the substrate to create ATP for the mitochondria or some such thing that I don’t fully remember right now.

with this regimen, I’ve been able to sleep better(even occasional semi-pleasant dream recall) significantly less joint/muscle pains, and even the ability to interact with large groups for many hours together without the expected anxiety and moodiness that would usually require me to hide out somewhere for a while.

unfortunately, my sense of smell and taste is still rather dull and I think that contributes to me generally overeating, so I have a large amount of fat to lose, but I feel that soon I may be able to make a serious attempt at dieting without the fatique and stress that have prompted me to quit previous diet plans. All in all, I’m pretty happy with my life for the last few weeks! thanks for all the information you provide for so many of us…

Deb
Thanks for sharing and I love hearing these results: “sleeping better(occasional semi-pleasant dream recall) significantly less joint/muscle pains, and even the ability to interact with large groups for many hours together without the expected anxiety and moodiness”

Oh and I’d suggest quitting the coffee – it’s a strain on the adrenals, affects blood sugar, depletes key nutrients like zinc etc and very likely affects anxiety levels/sleep. I assume this is in place: real whole food, animal protein, eating to control blood sugar and no gluten?

I haven’t been fully onboard with the diet changes; extreme cravings for bread and probably sugar. I borrowed Julia Ross Diet Cure from the library and in the middle of reading it, I admit I got sidetracked in a very good way to your blog and the Pyroluria issue in particular. Finding a way to deal with those symptoms became top priority for me. I’m assuming that even not eating properly and still getting some acceptable results on that front; results will be even better once I can get my diet cleaned up.

I tried l-tryptophan for sleep last night and had disturbing unpleasant dreams, and don’t feel rested. 5-htp does the same thing so not sure about it…maybe take earlier in the evening?

Hi Trudy
I have been on the protocol now for 3 weeks and I have had a significant improvement in my anxiety but still have a way to go as well. I have been taking: 1 X 1300mg EPO, 2 X 250mg B6 X 3 times a day, 2 X 500mg L-tryptophan X 3 times day, 1 X 50mg zinc X 2 times day, 1 X multi vitamin/mineral X 1 times daily, 1 X magnesium (not sure of dose) X 3 times daily.
I tried GABA 125mg sublingual X 2 times daily as I felt I fitted the needs to use it but felt more anxious. Also the P5P seemed to make me feel more anxious.
I am still having no dream recall and my zinc test still tastes just mildly chalky. Should I keep increasing my B6 or am I taking too much already? Also should I increase my Zinc? I have just ordered Optizinc and being from Australia I can’t get Lidtke tryptophan.
I am a bit concerned about the safety of taking such high quantities but have not had any peripheral tingles.
I am gluten/grain/dairy free.

Thank you for the link Trudy. I have read it and still struggle to understand why I need so much B6 and my zinc tests indicate I am still low in zinc. I have to assume it is an absorption problem
Could you please send me some of the contacts for practitioners in Australia that deal with pyrolauria and you mentioned you could send. I live in New South Wales but could visit Queensland if I had to.
I need some advice on my dosages while I wait until you are able to do a consultation.
I know this is the right path so I am determined to continue but doing it alone is difficult and potentially dangerous given the high doses of B6 I am taking. I might try P5P again as whilst it made me feel more anxious it did help my dream recall.

I have been taking those supplements for 4 months and still don’t have any dream recall and cannot see any improvement in my anxiety symptoms.

I met my therapist recently and she told to keep the same dosage and type of supplementation because she says that it takes time. However, I can see by this blog that people generally see results before 4 months.

Tim
If you have the right combo and are not taking any supplements that contain copper, plus you’re taking a copper-free multi, a person should see results in a week. I have my clients increase the zinc and vitamin B6 based on symptoms or we may switch to another form.

Keep in mind that pyroluria is just one aspect of anxiety and everything else should also be considered: diet, caffeine, sugar, gluten, and low neurotransmitters

I had a neurotransmitter panel and the results show serotonin levels within the range but low and norepinephrine levels really low (out of the range).

I don’t drink any coffee and I am avoiding sugar and gluten. I drink alcohol eventually but in small amount in social occasions.

There is one more important thing, I have been taking 0.5mg of clonazepam for nearly 10 years and became dependent. When I don’t take clonazepam the anxiety symptoms are even worse, and I feel like 0.5 mg is not enough anymore. I tried GABA (puritans pride) 500mg 3 times a day but I didn’t notice any benefit from it unless when I open the capsule and put part of the content under my tongue.

I will have a go with Gaba Calm (sublingual) that you mention in this blog and see if it can help me tapering off clonazepam. I will post here in the blog later.

As I said before I am on this supplementation for about 4 months and couldn’t see any improvements in my anxiety symptoms: agoraphobia, panic attacks, dizziness, sweating hands, pounding heart, feeling uncomfortable to talk to people etc. Plus I don’t have any dream recall still.

Question:
Do you think that my clonazepam addiction can be sort of hiding/holding back the effects from the supplements or the supplementation is not being helpful anyway?

I am asking that because I am thinking about to come back to antidepressants as I am thinking that supplementation is not working for me, I really don’t want to but it seems the only option by now.

By the way, I am reading your book and thinking it is really, really, really helpful!!!

That being said if you are getting benefits with 500mg GABA under your tongue that’s encouraging and I’d pursue that if we were working together – and increase it until no additional benefits (or adverse – typically too tired, too calm or breathless).

I don’t ever have my anxious clients use tyrosine until we have things calmed down. 5-HTP can be stimulating for some people too especially if cortisol is high. Tryptophan may work better. I’d also test salivary cortisol levels – if they are high it can make you feel more anxious.

I am on my third week tapering off clonazepam with a dosage of 0.25mg daily. I have been using Gaba calm from Source naturals and it has been really helpful. At the same time I stopped the combo which contains tyrosine and I think it is helping as well. However , the anxiety symptoms are still present and definitely affecting my daily activities. Being in restaurants, meetings, cinema and talking to people is still very difficult for me.

Last week I had my first zinc taste test and it tasted like water even after supplementing zinc for more than 4 months. Just to be sure about the accuracy of the test, I asked my wife to test as well and she felt a very unpleasant taste. I suspect that the form of zinc that I am taking is not being properly absorbed by my body, therefore I decided to switch the form of zinc to optizinc from Solarray and will start next week. I will update later in the blog.

I will be thankful if you can spare a bit of your time to help me with the questions below:

1) Which dosage of optizinc I should start with, considering that for the last 3 weeks I have been taking 82.2mg of zinc citrate and before that I was supplementing 54.8mg?

2) Which dosage of B6 I should start with in conjunction with the optizinc mentioned above?

3) I have been eating fruits and nuts as a snack to help regulate my blood sugar levels, however I realized that some nuts have a high cooper/zinc ratio and considering that I am very low in zinc at the moment do you think I should keep on eating nuts in a daily base?

I am now on the chapter 4 of your book (Address problems with Gluten and Other Food sensitivities) and its reading has certainly being really helpful and I feel that I am learning a lot.

I am coming down after a very stressful 4 years and changing from a very even temperament, happy go lucky, positive, effective person to difficult sleeping, mild depression and exhausted.

I was tested as low zinc, high copper.

I am currently on 75mg zinc, 100mg B6, 100mg P5P with evening Primrose Oil and Vit C and Vit E plus 3 drops of Molybdenum for lowering the copper. I have been doing this for about 2 months and do not feel overly great. A little flat about things, tired all the time, mild headaches occasionally and very full on dreams (not scary just exhausting storylines) awakening tired. Given your suggestions to others I am thinking of lowering zinc to 50mg and raising B6 to 100mg.

I would like to fall pregnant soon for my third child. I have two healthy boys and suffered terrible hyperemesis G during both pregnancies. I have spoken to my GP and she said there is no clear answer to helpful pyroluria supplementation during pregnancy – she said some practitioners stop all supplements during pregnancy and other believing nutrients are very important during pregnancy continue with supplements.

I have done extensive search on this topic and there is almost nothing out there about what pyroluria woman should do during pregnancy.

This confuses me because (a) all the information states that pyroluria people must supplement for the rest of their lives; (b) surely pregnancy is no different to the rest of a person’s life; and (c) during pregnancy there is usually an increased need for nutrients as the baby will take nutrients from the mother to grow. Given this, it make sense to me to continue supplementation as usual.

Question 1: What are your general beliefs about continuing supplementation during pregnancy? You mentioned in a previous post that somewhere else on the web it states using no more that 40mg of Zinc for pregnant woman over 18 years.

Also, my two boys seem to also be pyroluric. My first son is on primer transdermal cream – 50mg zinc, 50mg BG, 25mg P5P and 22 mg MG. He suffers from tics as well as mild anxiety and obsessive compulsive disorder. The anxiety and the OCD has almost completely gone away but he still gets tics (mostly facial).

Questions 2: What is your experience or knowledge of any connection between tics/tourettes and pyroluria?

I can’t give advice about supplementing during pregnancy simply because there have been no studies on the safety aspects, but I agree it does make total sense. If you can get a doctor’s approval and have them monitor you and the baby then that would be your best option. Just so you know low vitamin B6 is a common contributing factor in hyperemesis G.

That’s wonderful to hear about your first son’s anxiety and OCD going away on this protocol. I am not familiar with a connection between tics/tourettes and pyroluria but I will do some digging. In the meantime, this is what I do know: with tics/tourettes I think gluten and this is common in pyroluria.

You’ve probably addressed all this but just in case: I’d also look into other food sensitivities, additives, dyes, salicylates, oxalates, low magnesium, artificial sweeteners, candida, fatty acid levels. This is a great book: Natural Treatments for Tics and Tourette’s: A Patient and Family Guide By Sheila Rogers DeMare.

She doesn’t mention GABA (but does mention taurine) and based on this research paper: Reduced GABAergic inhibition and abnormal sensory symptoms in children with Tourette syndrome http://www.ncbi.nlm.nih.gov/pubmed/26041822 I feel a trial of GABA would be worth it. We do see low GABA in pyroluria all the time and the pyroluria protocol helps to make GABA (and serotonin) and this could be the reason it’s been helping.

I just found this too: Nondopaminergic neurotransmission in the pathophysiology of Tourette syndrome. http://www.ncbi.nlm.nih.gov/pubmed/24295619. It appears any of the neurotransmitters could be a factor so doing the amino acid questionnaire and a trial of each one may provide a solution.

I’d love to hear how he does! And thanks for asking the question! I just learned about the neurotransmitter/Tourette’s connection!

Trudy, do you find that with your pyroluria patients that along with supplementing with zinc, B6, and GLA, that you often have to supplement with tryptophan or gaba as well to stabilize ones anxiety and/or depression?

Hi Trudy I’m improving with my protocol; 1500 mg of tyrosine in the am is making a difference in my daytime energy levels and I believe that adding in niacin up to 500 mg of immediate release niacin is also helping with sleep. I actually had a funny dream last night that I have remembered all day. Have you ever heard of any one remembering a vague dream the next night when they go to bed and falling back into the same dream the next night? I’ve had that experience few times. I will sleep and dream something but won’t fully remember it when awake. The next night I will be drifting off when I remember the dream and I will sort pick up dreaming where I left off.

I’m also curious about something else. Will I get back my light olive skin tone I had as a child? I used to be able to tan darkly in just minutes but have gradually paled so much that I’m a rather sickly shade. I’m unable to really determine what my skin tone actually is other than kind of a pasty colourless one. I’m hoping I can start making melanin more on the B vitamins. The GLA I’m now taking from borage oil and the flakyness is drastically reduced. I just use a dusting of mineral powder now and feel confidant my skin is smoother.

Trudy,
Thanks so much for the blog and all your work! A few questions for you:
1. I score over 35 on the assessment and would have to pay for the test out of pocket. Given the amount of symptoms I have is there necessarily direct benefit in getting tested or just start supplements?
2. Given that it runs in families and our 3 children have multiple symptoms including OCD/Trichotillomania in our youngest (3 y.o) and Autism in our middle (5 y.o.) and our 2 girls (3 and 7 y.o.) look exactly alike, would it be advisable to start them on supplements as well?
3. If so, are doses the same for children as adults and are there liquid or cream forms of each supplement?
Thanks so much!
Jenny

Jenny
I don’t do the urine test and just rely on the questionnaire and response to supps. I can’t give advice re your kids via the blog but I will say that I have many moms start the protocol with their kids and they find it’s easier once they have seen the results themselves they know what to expect and what questions to ask.

With your youngest (OCD/Trichotillomania) I’d look at tryptophan, GABA, inositol and NAC too (although I recently heard from a mom whose child’s OCD was much improved on the pyroluria protocol, likely because the nutrients are co-factors for making serotonin).

Pyroluria is very common in autism so if he/she has the social anxiety then it’s likely the pyroluria protocol will help.

Adult dosing for 120lbs, half that for 60lbs and so on. I don’t have the liquid supps as a blog post but am in the process of gathering some options and can share later.

I am working on a pyroluria questionnaire for kids and would love your feedback on their symptoms (as they relate to the current questionnaire)?

Dear Trudy, thank you so very much for this article. Someone asked me yesterday if I suffered with pyluria. I’d never heard of it, but as I read the symptom list, so much of my life made sense. I’m so happy that it’s such an easy problem to fix. It explains why my 2 sons and 1 of my granddaughters suffer with anxiety when their upbringing was particularly designed to give them confidence, inner strength and knowledge of how loved they are. I’d always thought my anxiety was through my troubled upbringing. How wrong I seem to have been! Oh, and does coconut flour count as a ‘nut flour that will increase copper’? I don’t eat a lot of baked goods – even the gluten free ones – but it’s nice to have one option if that’s possible. Many thanks again!

Hello dear Trudy, I just have a question if I may? I have been taking 3 Evening Primrose Oil capsules a day. They are Blackmores’ brand, providing 1g of EPO with 100mg GLA per capsule. My lips started to be really badly dry and I was picking at them (a life-long habit). My lips had been really good since I cut the sugar and most grains starting 18 months ago. I’ve since dropped the EPO to 2 capsules a day and this has helped immensely. I’m wondering if dry lips is a symptom of pyroluria, and was interested that it happened when adding (obviously too much, for me) EPO. I know how much you love researching pyroluria and thought this observation may be interesting to you. I’m doing really great with the B6 and zinc and it’s all thanks to you!

Hi Trudy, this question may have already been asked…sorry if it has. I answer yes to over 25 questions…stopped at that point. had muscle testing done to see if I was stronger with the zinc, B6 and primrose oil (tested individually) and tested yes to all counts… so started them 1 1/2 weeks ago. Feel so much better.. My Dr gave me a form to get the urine test done but may need to go private. Thought it would be nice to have an actual diagnosis..Question : Is it necessary to stop supplements for 1 week or 1 1/2 weeks to get an accurate reading ?

First, I really want to thank you for your help! The amino acids (started 2 weeks ago) have really been helping.

I’m pretty sure I have prylouria because of my health issues including social anxiety, but the treatments you have recommended (started 1.5 weeks ago) do not seem to work for me. The primrose oil doesn’t harm me, but I dont think I feel any benefits from it. Same for the B6 although it may be helping my l-tryptophan/5-htp in converting to serotonin. The problem is manganese and zinc; I am taking optizinc and a vitamin shoppe manganese brand. Even after taking either zinc or manganese with a meal and water, I get horrible side effects. My skin will get worse, I get muscle tension (which I never have usually), stress symptoms, much worse sleep (usually sleep great), not as much energy as usual; so pretty much all the symptoms of toxicity. I even tried taking a microdose, less than 1/8 of the recommended dose and it still hurts me (although not as much). The thing is, regardless whether I have pyroluria or not, Im pretty sure im deficient in zinc because i dont have lunulas on my nails and the other conditions I have including leaky gut syndrome (so I couldnt have absorbed much zinc at all for years). I am really stumped and not sure what to do.
Do you have any ideas Trudy?

Kenneth
The zinc could be causing copper dumping. I’m not sure that manganese would do this but anything is possible. I like to isolate the offending nutrient and then proceed from there. If it is the zinc, I’d consider another form, very low amounts, once a week and possibly adding molybdenum.